Latest Updates

Monday, April 12, 2008
Okay, Prayer Warrior’s, it’s that time again. We have an appointment this Wed. at 8:00 a.m. in clinic and then Alaina has her MRI scheduled for 10:00 a.m. We are really expecting everything to go well, but there is still that lump in our throats. They will scan her brain and spine and also do an Ultrasound of her kidneys, bloodwork, vitals, etc. and we will also see the Physical Therapist to get her inserts for her shoes. A few weeks ago, Alaina began complaining of her right foot hurting and it became increasingly more difficult to make her keep her shoes on. She was limping and there was a considerable change in her gait. I talked with them at CH about her symptoms, but decided to watch her for a few days. I had just bought Alise and Alaina both some new shoes and thought that could be the problem. We did end up going to clinic just to let them see her and also to see the P.T. there regarding possible inserts for both shoes because she pronates both feet. Well, her symptoms have totally subsided and she is not having any pain at all now....Praise the Lord!!! So, it must have just been the new shoes.

I really can’t tell all of you how much Alaina is enjoying life. Many of you see her on a regular basis and you will agree that she is making up for lost time. She is so happy, loves to sing, and dance, and giggle, and eat chocolate!!! Many times she will sing and hum when there is no music....she just has a song in her heart. I believe her very favorite thing to do is go to church. Anytime we mention going to church, she says, “I go church. I want to sing.” We have taking the kids with us to choir a few times recently and Alaina loved it!!! I truly believe in my heart that she has heard heavenly singing throughout her illness and she has a special place in her heart for church and music. I wish I could know exactly how God has comforted her during the past 1 1/2 years. The treatment she endured was so harsh, and yet she maintained a pleasant disposition. She will never be able to realize the impact that her precious spirit has made in my life.

Physical Therapy is going very well for Alaina and she loves them all. Both girls enjoy Speech Therapy and both are making improvements in that area. I was able to take the girls to The Rehab Center where I worked prior to my job as a full time Mama. It has been really good for me too. I loved work and I enjoy catching up with them.

Alise has an ENT appointment Thurs. It is my understanding that Dr. Kanzler will tell us if surgery may be required due to fluid. We have been using Nasonex and ear drops since our last visit in hopes this will correct her problem. So, please add this to your prayer list.

We have one more request. Trent has a bad sinus infection and just isn’t feeling himself. I took him to the Dr. this morning, so he has started Amoxicillin. His symptoms began last week with a low grade fever, then he developed a cough, and this morning woke up nauseated and vomiting. Please pray that he soon feels alot better.

Please continue to pray for our sweet friends that continue to fight cancer. They endure so much. We love you all!!!

Jerri and Jeff
 

Monday, March 3, 2008
I apologize for the delay in updating. We had good reports last week from our Dr.’s visits. Alise and Alaina went to each of the appointments and were very supportive of each other. During Alaina’s stick for her blood work, Alise held her hand, and during Alise’s hearing test, Alaina held Alise’s hand. It is such a blessing to see the two of them together and how they take care of each other. They truly are best friends!!! They enjoy other children, but they want to know right where the other is all the time.

Alaina’s blood work still isn’t normal, but it is improving and Dr. Reddy seemed pleased. We are going to continue Bactrim until around the end of this month and then we can stop!! As a mother, I’m anxious to get her off of it, but it’s not a problem giving it to her. She actually seems to like it, but I must say that we have been very blessed that Alaina has never given us a problem taking her medicine. Even when we knew that it tasted horrible, she would still open her sweet mouth without any resistance....What a girl!!!

One of the areas to monitor once treatment is complete is Alaina’s growth. Many children have to take growth hormones. Dr. Reddy said that right now Alaina is just where she should be. When first diagnosed, she was in the 25 % for height and now, almost 6 months post treatment, she continues to be in the 25 %. She is currently in the 75% for weight. She is almost 2 inches shorter than Alise, and weighs 1 pound more. Realistically, Alaina will more than likely be shorter than Alise. Everyone enjoyed seeing how happy Alaina is. She and Alise ran up and down the halls laughing and giggling....It was wonderful!!!

Now, for Alise....she was such a big girl for her hearing test. I was so proud of her!!! The audiologist agreed that she is not hearing well in either ear, but said that he felt once the fluid was resolved, her hearing should improve. We return to Dr. Kanzler (ENT) Wed. to see what he thinks we should do.

Thank you all for continuing to check on our family and for your continued prayers. The Lord has been so good to us!!

Jeff and Jerri

Monday, Feb. 25, 2008
Some of you may have read this poem before, but today was my first time. I’m unsure of the author, but thank you Danny Hankins for sharing this with me. It is so true!

It’s in the Valleys I Grow

Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It’s then I have to remember
That it’s in the valleys I grow
If I always stayed on the mountain top
And never experience pain,
I would never appreciate God’s love
And would be living in vain.
I do not understand
Why things happen as they do,
But I am very sure of one thing,
My Lord will see me through.
My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death,
His victory was Satan’s loss.
Forgive me Lord, for complaining
When I’m feeling so very low.
Just give me a gentle reminder
That it’s in the valleys I grow.
Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.
Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it’s in the valleys I grow!


As I read this, I am also reminded that every time I’m on the mountain top, there are many others going through their time in the valley. Tonight, I am lifting prayers up for all of you that are going through the valley. Heartaches present themselves in many forms and although I may not know who you are or what specifically is causing your pain, God does. May God bless you all!!

Jerri

Sunday, Feb. 24, 2008
Hello everyone!! I hope you all are doing well. The 5 of us are doing very well. The Lord has blessed us with good days. We have all managed to stay relatively well. Alaina is living life to its fullest!!! She is so happy, full of life, and seems to be getting stronger daily. She is receiving P.T. and Speech 2x/wk. (Alise is also receiving Speech).

Speaking of Alise, we took her for an ENT appointment on the 11th, as you have to go through an ENT to get a referral for a hearing test. Thinking that this visit would be a breeze, we were taken back when he said that Alise isn’t hearing well out of either ear due to fluid. We couldn’t believe it. The girls have only had one ear infection in their life and Alise has never acted as if she wasn’t hearing well. He explained, that her ears are not infected and prescribed ear drops and nose spray to attempt to treat this conservatively. We have our hearing test Wed. and a follow-up visit with our ENT soon. If the fluid hasn’t cleared, we could be looking at getting tubes. We are praying that the spray and drops will do the trick and Alise will start hearing better. Then maybe both girls will begin to speak more understandably. They told us in therapy that Alaina will pronounce the words correctly at times, Alise will pronounce it incorrectly, and then Alaina will repeat what Alise has said. It’s a vicious cycle!! Ha

Well, if all goes as planned, we gave Alaina her LAST dose of Bactrim tonight. We are scheduled for a check up Tues. at which time we will know if Dr. Reddy still thinks it’s time to stop. Then she will be taking NOTHING!!!!! What a blessing!!!! The only thing that I really dread on Tues. and all the appointments and MRI’s to come, is that since she doesn’t have a central line anymore, she will have to be stuck. This can be a time of stress for both of us if they have trouble getting a vein. Please pray that this is an easy process.

Trent is doing great!!! He continues to love school and of course, Mrs. Nora. He is happy, creative, and yes, a typical boy!!! It thrills me to watch he grow and mature. He loves to sing, listen to music, color and draw, and he is even beginning to enjoy playing with his sisters more!! Last Saturday was Trent’s last basketball game. He went out with a bang!!! HE RANG THE BASKET!!! He has at practice, but this was his first time to actually make points in a game. It was wonderful seeing the excitement on his face as he heard everyone screaming his name!!!

Tonight we practiced our Easter music. The kids went with us. Alaina sat with me, Alise with PawPaw (aka Tyler Barnes), and Trent played with some of his friends. As I sat in the choir singing, holding Alaina, listening to her sing and dance, watching the sweet smiles on Alise’s face, seeing Trent enjoying himself, and watching my wonderful and faithful husband play the guitar and sing, I thanked God for blessing my life so richly. We serve an incredible God. Tonight, I thank God for my wonderful family and I pray that I can be the wife and mother that they deserve.

Please remember so many of our friends that continue to fight cancer. We had another child with AT/RT to pass away this morning. Please pray peace for this family. As always, thank you for loving our family and keeping us in your thoughts and prayers. I will update following our Dr.’s visits this week.

Praising God for Restoring My Family!!!!
Jerri and Jeff

Sunday, January 27,2008
Hello everyone!! Just letting you all know that everything has calmed down a little bit here at the Atkins’ house.....THANK GOODNESS!!

Alaina is healing nicely at her central line site. We are loving not having any “noodles”!!!! It’s wonderful to just bathe her and dress her without worrying about cleaning and flushing her central line.

Alaina did have a Physical Therapy evaluation last Monday and she and Alise both received a Speech evaluation. We are going to have P.T. and Speech 2x/wk. Our next appointments are tomorrow.

The fluid-filled area on Alaina’s head is somewhat improved. It is still not causing any complications. Dr. Satchivi asked that I call him back in a week or so and let him know how it looks. I plan to do that tomorrow.

Otherwise, we are just coping with everyday battles...you know, fighting over toys, finding something everyone will eat, and getting the girls to go to sleep at a descent time. These are welcomed battles!!!!!

As well as we are doing, my heart and mind are very burdened tonight. One of our sweet friends, Claire Devins, who also is battling AT/RT, had a scan a few days ago. After receiving the news that all was clear, her mother, Liz, received a phone call that the Dr. wanted to talk with her. A small spot showed up that could be tumor returning. Please pray with us tonight and tomorrow that it is NOTHING. They will know more tomorrow. Please visit her site and leaving any encouraging words you may have.....www.caringbridge.org/visit/clairedevins

Jeff and Jerri
 

Friday, Jan.18, 2008
Sometimes when it rains...it pours!!!!!!!!!!!! Everything has been going so well. We were having absolutely no problems, until Tuesday night when Jeff found the fluid-filled area on Alaina’s head. We received good news from Dr. Reddy the following day, but decided to also call Alaina’s Neurosurgeon (Dr. Satchivi) to get his take on everything. They gave us an appointment for yesterday morning. He also feels that everything is okay as long as it remains the same size or decreases in size. If it should become more enlarged then he said we would do a scan to see what exactly was going on. He had a couple of explanations. He explained that when we get a bump on the head (if that is was happened), initially, the area becomes hard because the blood has clotted, but several weeks later, the blood returns to liquid, which could make it feel soft like the area on Alaina’s head. So, what we are feeling could be blood. But, he said it could be cerebral spinal fluid and explained that, since the area of concern was near the surgical site, and also the area that received the greatest amount of radiation, and also the fact that she has received such high doses of chemo, the healing of that area may be prolonged. He said that the incision itself had healed nicely and that the fluid should resolve as she has longer to heal. While visiting with Dr. Satchivi, he also commented on how well Alaina’s last MRI looked!!! That was encouraging to hear. I really can’t hear that enough. Sometimes I wish they would call me everyday and tell me how wonderful it looks...just for my peace of mind.

Okay, so the story doesn’t end here. Alaina and I came home around lunchtime. My parents were here with Trent and Alise. The kids ate lunch, my parents went home, and I put the girls in their room for a nap around 1:30-2:00 p.m. Trent was watching T.V. and I was trying to catch up on laundry. I happened to be in the living room and heard Alaina fussing. I looked in the girls room and they were both sitting on the bed, looking at me like the cat that ate the canary. I noticed Alise was holding the ends of Alaina’s central line, but Alaina was sitting too far away. Yes, it’s true, Alise pulled Alaina’s line apart. She didn’t pull it out of her chest, but pulled the two lumens off. For 2-3 minutes......I PANICKED!!! I grabbed the emergency kit that I’ve had for a whole year and never had to use. In it was the clamp they gave us in the event that something like this should happen. Since it is a direct line into a major vein, without clamping it off, it would continue to bleed. I just kept thinking, “If I can just get it clamped off, everything will be okay!!!” The clamp BROKE!!! Can you believe it?

Okay, now picture this.....I was at home alone with 3 kids, Trent was running in behind me...scared to death, Alise was totally unaware of what she had done and began to ride her scooter in the house, Alaina was actually giggling a little bit and bleeding alot....she kept trying to put her ace wrap back on. By this time, I had managed to get Alaina to the kitchen. We were sitting in the floor. I was manually holding the clamp to stop the bleeding. Once I was able to stop the bleeding I started thinking straight again. Trent brought me the phone and I called Jeff’s cell phone first. He came home immediately. Trent helped me get my cell phone that had all the emergency numbers. I was told to bring her back to CH and they would be calling the surgeon and they would probably remove her line that evening. When Jeff got home, he wrapped a rubber band around the clip and tied the end of the line with a bread tie.....It worked like a charm!!!! Jeff’s mother came from work to stay with Trent and Alise and we headed for Birmingham. It was now around 3:30 p.m. We arrived around 4:45 p.m and by 6:30 p.m. we had gotten in, filled out paper work, saw the Dr.’s, and the surgeon had removed her line!!!! Alaina, once again proved what a brave and big girl she is. They removed it without anesthesia. It was a little difficult initially, but after a couple of minutes, it slipped right out!!!! Hallelujah....WE ARE LINELESS!!!!! It feels great to hold her without anything attached. We are very thankful that Alise didn’t pull this little stunt while Alaina needed her line. Actually, we thank her for speeding things up a bit. We return to the surgeon for follow-up in a week. She hasn’t missed a beat. She is in no pain, and doesn’t seem to even be sore!!! Thank you Lord, once again for taking care of our baby!!!

We were able to visit with our nurses on 4th floor. It was great to see them all, talk and visit, watch Alaina play with them, and then GO HOME!!!! We also saw some of our friends in the hospital. Please remember Meredith Dyer (website on our links), as she is having surgery today to remove her adrenal gland. Also, remember our friend, Carly Parker (www.caringbridge.org/visit/carlyparker) she is also having surgery today. Brooke Routon (www.caringbridge.org/visit/brookerouton) is still in the hospital waiting for her counts to allow her to go home. Lily Porter (www.caringbridge.org/visit/lilyporter) is also back in the hospital with fever and possible shunt infection. Please pray for Joe Slater (he is from the UK) www.caringbridge.org/visit/joeslater Also AT/RT. He received bad news on his MRI this week.

Thank you all for your continued support and love and most of all the prayers. Yes, the past 3 days have been very trying, but today we are thankful that the place on Alaina’s head isn’t serious, that we don’t have a central line anymore, and that things are becoming more and more normal.......GOD IS SO GOOD!!!

Expecting an uneventful day!!!
Jerri and Jeff

January 16, 2007

Hi everyone. I hope we didn’t scare anyone too badly. Last night while bathing the girls, I noticed a fluid filled area around Alaina’s incision. It was about 2-3 inches long in a semi-circle shape. It is almost like a large blister under the skin.

Jerri took Alaina to Children’s this morning, and after looking at it Dr. Reddy feels like it is of no concern. Since it is between her skull and the deepest skin layer she thinks it may be from a “bump on the head”. That might be a reasonable answer, but Jerri and I feel like getting a second opinion. She is not experiencing any thing out of the ordinary, and we don’t remember her hitting her head on anything. Even though it is filled with about an 1/8 of an inch of fluid, it doesn’t even seem to bother her.

We decided to call her surgeon to get their take on things so, Jerri and Alaina are going back to B’ham in the morning. Weather permitting of course. It is actually snowing here! That may not seem like a shock to some of you, but for our area this is a big deal. People seem to forget the most basic driving skills when it snows. You know things like STOP, GO, SLOW DOWN, SPEED UP seem to go out the window.

Please pray that this will turn out to be a nothing at all. And that Dr. Satchivi can give us some answers. A special thanks goes out to Jared our web master for posting yesterday’s update for us on such notice.

We love all of you who have prayed us through so far.
Thank You, Jeff and Jerri

Wednesday, Jan.9, 2008
I’m sorry that I was unable to update sooner. We didn’t get home until around 4 p.m. Jeff had to return to work, the girls and I went to my parents house to get Trent, and then the kids and I headed to church.....What a long day. It is now 10:44 p.m. and everyone is asleep, so I can finally update.

Our appointment was at 8:30 a.m.. We went for the ultrasound of her kidneys first (around 9:30 a.m.). Alaina did great. She cried some, but never resisted. Alise, Jeff, and I were all in there with her, and it really helped that Dora was on T.V. Her MRI began around 10:30 a.m. and by 11:45 a.m., she was finished. She recovered well from the anesthesia, and by 12:00 p.m., we were back in clinic for blood work, vitals, etc. Dr. Reddy couldn’t see us until after 1:00 p.m., so we headed for lunch. We went to Capt. D’s and boy, did the girls eat!!!

We saw Dr. Reddy about 1:30 p.m. and her statement went something like this.....” Her brain looks GREAT!!!!” She actually said that she was so excited about how well the MRI of her brain looked that she completely forgot to look at her spine. After she examined Alaina, she reviewed the MRI of her spine and the results were CLEAR as well!!!! As were her kidneys!!!

Alaina’s blood work looked good. Her WBC was 3.53 (5.50-15.50 normal), HCT was 29.6 (34-40 normal), and platelets were 209, 000 (140-440,00 normal).

Alaina now weighs more than Alise!!! (Alaina=33 lbs. 8 ozs., Alise=32 lbs. 3 ozs.) Alise is still taller. (Alise=37.4 in., Alaina= 36.4 in.)

Our next appointment with Dr. Reddy is on Tues., Feb. 26th. and her next MRI will be Wed., April 16th. They will be calling us in a few days to schedule a time to remove Alaina’s central line!!!! Hallelujah!! Dr. Reddy said that in a couple of months we can stop taking Bactrim (antibiotic). Before too long, she won’t need any additional care other than what every other normal 3 year old requires!!! Thank you Lord for hearing our prayers!!!!

Dr. Reddy did say that her gait had improved since our last visit, but still agrees with us that O.T., P.T., and Speech are needed. We received an order for these services and will begin soon.

Thank you all for your continued expression of love to our family!!!

Resting a Little Easier,
Jerri and Jeff

Friday, Jan. 4, 2008
HAPPY NEW YEAR TO EVERYONE!!!! I’ve been meaning to get an update posted before now, but wow, have we been busy. I can’t believe it’s 2008!!!

We are all doing absolutely GREAT!!! Alaina is having the time of her life. It has been a blessing to watch all 3 of our kids have such a wonderful time this Christmas season. We are looking forward to this next year and praying that cancer is not a frequently used word.

Please remember Alaina is your prayers. Her MRI and ultrasound are scheduled for this Wed. We have to be in clinic at 9:00 a.m. (without eating anything before her MRI at 10:00). She will have the U.S. of her kidneys first, then the MRI of brain and spine. We will, of course, see Dr. Reddy, have blood work checked, etc. Let me say that Jeff and I expect nothing but FANTASTIC results, but this is still a very anxious time for us.

We were scheduled to see her G.I. Dr. following her MRI, but I canceled that appointment because Alaina is having absolutely no problems in this area anymore...praise the Lord!!!

There are some things that I’ve mentioned previously to Dr. Reddy and Allison concerning Alaina’s developmental skills and gross motor skills that we have noticed in the last several months as we have been challenging her more. Alaina is functioning well, but there are some areas in which we feel she can improve. It is obvious to us that she is weaker on her right side (upper and lower extremities). This would be effects of her brain surgery. She does correct her patterns of movement upon command and tactile cues. She has made improvements in the last couple of months as we encourage independent weight bearing on her right leg, using reciprocal stepping when going up and down steps, etc. We have also been encouraging her to cross midline when participating in upper extremity tasks and fine motor tasks. As an O.T., I am trying to be objective in seeing her deficits, but I want to be sure the “Mama” side of me doesn’t get in the way. That’s why we have requested a P.T., O.T., and Speech evaluation. Our feeling is, the more people involved, the better.

As far as Speech Therapy goes, this is an area of concern with Alise as well. Neither of the girls are speaking age appropriately, however this is improving. We will be talking with our Pediatrician regarding Speech for Alise too.

Recently, I’ve stopped keeping a daily diary for Alaina...the reason being that....I really didn’t have much to document!!! Thankfully!!! The only medication is Bactrim (antibiotic) 3x/wk. and cleaning (3x/wk) and flushing (daily) her central line. This is so routine to us, that writing it down really isn’t necessary. I can’t imagine how wonderful it will be once her line is removed. We have been so fortunate that she hasn’t had any problems with her line....another blessing from God! They will probably schedule it to be removed shortly following her MRI on Wed.!!!!

We are starting to get our “identical” twins back!! When Alaina was going through treatment, I remember looking at the two of them lying in their beds, and thinking the days of them looking alike were over. Alaina’s frail body, smaller features, no hair/eyelashes/eyebrows, her weak cry, a nose tube, poor appetite, nausea.......how could she survive, much less ever look like Alise again? We would come home from the hospital and I actually thought Alaina looked reasonably well....until I saw her next to Alise....then I just wanted to break down. Now, many times throughout the day, I look at Alaina and Alise together, and I want to break down, but now for a different reason. Now, with a humbled spirit, I thank my Lord and Savior for restoring my baby’s health. ALL THINGS ARE POSSIBLE WITH GOD!!!

The girls are now in a full sized bed TOGETHER!!! They LOVE being able to sleep together and many times play and giggle for hours before finally going to sleep. It’s just like I imagined it would be...I love lying in bed listening to them on the monitor...after all, they missed out on each other over the past year and have some catching up to do!!! It’s music to our ears!!

On Thurs. Trent will be 5 years old!!! Happy Birthday Trent!! We love you so much!! He has grown up so much this past year. During his prayers, he still thanks God that Alaina is feeling better. He has been one of Alaina’s biggest prayer warriors and is such a blessing to our entire family!

Please continue to remember all of the precious children battling cancer and the many that will be diagnosed during this next year. One of our neighbors was recently diagnosed with T-cell Lymphoma. Her name is Brooke Routon. She has a caring bridge site www.caringbridge.org/visit/brookerouton Drop her a line if you can. She is back in CH with shingles. Also, Bayleigh Phillips will be having an MRI on Monday. Meredith Dyer will be having tests also on Monday to see if she will require additional surgery. Congrats to Taylor Hendrix who had her port removed today and is doing well. One more step toward putting this past year behind her!!! Owen Lyons (AT/RT) will also be having his MRI this next week. He is one year post treatment and doing well!!! Carolyn Thompson is having trouble with her legs. Please pray that this will soon resolve. Janna Hamilton received stable results from her latest MRI, but is having blood pressure problems. Lindsey Ledwon (AT/RT) has recently relapsed. Please pray for her family as they await a plan. Joe Slater’s (AT/RT) last MRI showed a blemish that is concerning. He will be having another MRI soon. Julia Pinotti (AT/RT) is in the hospital with a virus.

I will be updating soon with the results of Alaina’s appointment. Thank you all for remembering her in your prayers. We love and appreciate you all so much!!

Jeff and Jerri
 

Wednesday, Dec. 26th
What a wonderful Christmas we had!!!! We are so thankful for where we are this year compared to last. God has been very good to us and brought us through in a way only He could.

On Christmas Eve we spent time with Jeff’s family and on Christmas Day my side of the family. The kids had so much fun and enjoyed EVERYTHING. It was wonderful for Jeff and me to see our children so happy after such a rough year. They went through this trial just as we did. Although they really can’t put it into words, they have been affected too. Our prayer is that this completes Alaina’s experience with cancer and that this happened when the kids were still young enough that they won’t have any memory of all that they have been through.

Just as I begin to breathe a little easier, our “AT/RT world” is hit with very discouraging news that one of our little friends, Lindsey, has relapsed. On Christmas Eve and Christmas Day she began to feel badly. A trip to the hospital and a scan revealed that her tumor has returned. Just a couple of months ago the scan showed that everything was CLEAR and now they are making decisions about the next course of action. Please pray for this family as I know how devastated they must be. Her website can be found under Alaina’s friends links.

I really need to apologize to everyone for the lack of updates and to many of you for not emailing in a timely manner. Please don’t think that it is a sign that we don’t need your continued prayers. To be honest, I’ve really needed to take a step back. It’s been really difficult for me to find a balance between the cancer world and a somewhat normal life. I hope that this is making sense to everyone. For over a year now, we have met many families dealing with a child having cancer, families who have lost children in their battle against cancer, and the possibility that Alaina could lose her battle. The emotions that surface are incomprehensible.....
I think about how quickly one can relapse and I get sick to my stomach. I look at how well Alaina is doing and I’m ecstatic. I think about what my life would be without her and my heart is flooded with sadness. I see how much love she has in her heart and I’m amazed. I watch the three of our children playing and laughing together and I’m thankful. I hear of another child who has been recently diagnosed and I feel for that family and recall the nightmare of the day we were told. I think about our next scan coming up and I become anxious and fearful. I watch the peaceful expressions on my children’s faces as they sleep and I become calm.
This Christmas has taken on a totally different meaning and my thoughts have, not only focused on the birth of our Savior, but also on the emotions of Mary. Until this year, I never really had a grasp of what Mary, the mother of Jesus, was feeling as she felt the excitement of holding her precious baby in her arms, while knowing that, in order for His purpose to be fulfilled, she would experience much sorrow. She was still His mother, and she loved Him with a mother’s love, even though He was the Savior of the world. When I hold Alaina in my arms, I know that as much as I love her, God loves her more and has a purpose for her life. Do I understand it? No, but I don’t have too. My responsibility as her mother is to help her be the best she can be and to rejoice as the Lord uses her (and Trent and Alise) for His honor and glory!!

As we enter this new year...2008! Let’s make resolutions to God. Of course, we each have some personal resolutions, but let’s all think about how we can serve our Lord and Savior more effectively. I know that I could really use some improvement in this area. Thank you all for allowing me to use the website to express what’s on my mind. It truly is helpful in sorting out my emotions. I love you all and wish you all a VERY HAPPY NEW YEAR!!!

DON’T FORGET ABOUT ALAINA’S UPCOMING APPOINTMENT......JAN. 9TH!!

Admiring the Strength of Mary!!
Jerri

Wednesday, Dec. 19th
I hope everyone is having a wonderful holiday season. We have been enjoying all of the Christmas cheer that we missed last year. Thinking back, I don’t think we even played any Christmas music last year. Boy, are we making up for lost time!!! Every time we get into the car the kids start requesting their favorite song.....Trent’s favorite is Santa Claus Is Coming To Town, Alise likes Here Comes Santa Claus, and Alaina LOVES Frosty The Snowman. I love to hear the 3 of them singing, dancing, and clapping, and most of all the huge smiles on their faces!!!

Alaina is just doing remarkably well. No problems, no complaints, and NO CANCER!!!! She only takes Bactrim (antibiotic) 3 days/wk. Of course, she still has her central line, so we have to care for that, but otherwise we do normal, everyday things. Alaina’s next appointment is JANUARY 9TH. She will be having another MRI of her brain and spine, ultrasound of her kidneys, as well as bloodwork and a check-up with Dr. Reddy.

Alaina is so happy. She is happy to go and do ANYTHING!! She loves taking Trent to school and picking him up, she loves playing outside, she loves going shopping, she loves going to church. She even likes to help with the house work and especially the laundry. (I’m anxious to see if she feels the same way in about 10 years!! Ha!) She is always happy!! She amazes me with how much love she has for everyone....even perfect strangers. There are times she will just hug and hug Jeff and me. You know, one of those hugs where you grunt at the end.....it’s wonderful. We receive voluntary kisses alot and she loves to tease us about who’s girl she is. If I ask her if she is Mama’s girl, she grins and says, “No, Daddy’s girl!” and if Jeff asks her, she is suddenly my girl again. Every now and then she is Trent or Alise’s girl. We are all very blessed to have our “old” Alaina back!!!

Now, for another praise report. As many of you know, Jeff and I have been concerned about Alise, and her chances of having problems since she and Alaina are identical. Several months ago, we began noticing some changes in Alise that were concerning to us, and as time went on, became more and more of a concern. She has had a change in her personality. She was our content, easy going child, but lately has become whiny, irritable, and hard to manage at times, her eating habits have changed, and at times we would notice her lying down, holding her head, etc. We talked with Allison (nurse practitioner) about these concerns about a week ago. There is such a fine line between normal and abnormal. All of the things we are noticing are NORMAL (most of the time), but we also remember Alaina doing these things. Jeff and I were finding ourselves more and more fearful and anxious about Alise, so Monday, I called again and they made us an appointment for today with Dr. Reddy. They are so wonderful to listen to the rambling of paranoid parents. Dr. Reddy evaluated Alise and saw no reasons for concern, but very graciously said that she understood how we felt and would order a CT scan if we wanted her to. We were definitely in agreement. We needed a little peace of mind....and we got it!!! They scanned her today and everything is fine!!! We are praising God that now we can relax about Alise and enjoy Alaina being cancer free....That’s the best Christmas gift we could receive!!!!!!!!!!!!!!!

Hope you all have a very Merry Christmas!!! Please remember Alaina on Jan. 9th. PRAY FOR CLEAR RESULTS!!!

Thanking God for the gift of Jesus!!!
Jerri and Jeff

Monday, Dec. 10th
Hello everyone!!! Hope you all are having a wonderful Christmas Season. We have been so busy and it’s been great. We’ve enjoyed being busy and away from the hospital!! We had several Christmas parties to go to this past weekend. We’ve enjoyed catching up with some of our friends and having some laughs. Jeff and I have been able to return to choir practice at church, the kids are enjoying being more involved with their friends. All 3 of our children love church, but Alaina really gets excited when we say it’s time for church!! It has been such a blessing to see her blossom into the little girl we once knew....God is so good and has so richly blessed us!!!

Trent has started playing basketball with our R.A.’s at church and they had their first game Sat. morning. It was so much fun watching him. Right now, he really doesn’t understand exactly what to do and uses the time on the court to socialize...Thank you Coach Greg for your patience!!! One thing we forgot to warn him about was the buzzer...THE LOUD BUZZER!!! The first time it went off, I thought he was coming out of his skin. Trent and Jeff sang in church yesterday. What a joy to watch my husband and my little boy sing praises to God together!!! Trent loves to sing and it just blesses my heart to watch him sing with such passion.

We really are having some wonderful days. The only problem right now is trying to keep the girls in bed at night. About a week ago, we had to take them out of their baby beds (something we really needed to do much sooner) because Alise climbed out of hers. Anyway, the girls love being able to get to each other and now bedtime has become playtime. They get into each others bed, laugh, giggle, play with toys, and talk constantly!!! It is so precious to hear them with each other, but after about 5-7 trips into their room to tell them to go to sleep, put them back to bed, and cover them up, it’s not quite as precious! ha! One thing that they love to do is lie in the floor together and hold hands, so in order to keep them in bed, I think we may have to put them in one big bed. It is wonderful having situations like this as one of our biggest challenges. I’d much rather be up until 1 a.m. (like I was last night), putting the girls back in their beds, than I had Alaina and I being in the hospital away from Jeff, Trent, and Alise.

There are so many things that I count a joy now, that a year ago would have been so much more frustrating. I enjoy so many of the “small” things in our lives now....playing outside, playing games, running down the hill in our front yard, playing with our neighbors dogs, going shopping, all 5 of us wrestling in bed, voluntary hugs and kisses, and my kids happy faces!!! I thank the Lord for His goodness in giving us 3 wonderful kids and teaching me how to fully enjoy life!!! There are also some things that I would have never done before, such as this morning, letting Trent wear his Halloween shirt (with a skeleton on it), just because he wanted to. I know many people today will think I’ve lost my mind by letting him wear a Halloween shirt at Christmas time. I initially told him, “No, it’s Christmas. We don’t need to wear a Halloween shirt today.” His response was, “But Mama, my friends will like it.” He’s right.....we don’t have to be like everyone else and so what if people look at us funny. Ha!

Thank you all for loving us so much and checking on us. Enjoy this Christmas like never before and hug and love your kids....even when your busy and stressed!!! And don’t forget what Trent has taught us.......do something fun and different to make people look at you funny!! What will it matter a few days from now, or a week, or month from now.....ENJOY LIFE!!!

Thankful to be CANCER FREE!!
Jerri and Jeff

Monday, Dec. 3rd
As you can tell from my lack of updates, we are staying pretty busy. We are all doing very well. Alise has had a bad cold and cough, but she is getting much better.

Alaina is loving life and reminds us constantly to enjoy each moment....and believe me, we are!!! We had a wonderful time this past Saturday at church. We had something this year that was a fantastic idea....Breakfast with Santa. We all enjoyed a very good breakfast, pictures with Santa, and there were several craft tables set up for the kids!!! All 3 of our kids had a great time and the girls went around hugging everyone...even people they didn’t know. I thank God for the love He has placed in their hearts....What a blessing!!!

This year we are enjoying Christmas like never before!! I’ve always enjoyed this time of year. I really expected that “cancer” would forever linger around the Christmas holiday, always thinking about last year, and living more in the past than the present. I can honestly say that, yes I still think about “this time last year”, but praise God we have so many blessings to count. I find myself thinking about all of the families that have lost their children and are spending their first Christmas without them. Please say a prayer for these families, that God would show them extra love and give them a peace which we can’t understand.

Something else has really been on my mind lately....As an Occupational Therapist, I have treated many children with special needs. Some that had strokes, brain surgeries, CP, developmental delays, and many other challenges. I always had a special place in my heart for these kids and their families, but now I have a better understanding of what they go through on a daily basis. I’d like to take time right now to say how much I love each of them and admire them greatly. Many of the parents had, not only a child which required extra care, but other children, a full-time job, and many other responsibilities.....WOW!! I can’t imagine the stress they were/are under, yet still managed to have it all together. Let me urge you, if you know of a family that has a child with special needs, put your arm around them and tell them how much you admire them. It may be just the boost they need to get them through the day. To all the families that I’ve had the privilege to work with throughout the years....I LOVE YOU ALL VERY MUCH!!!!

Please remember...Alaina returns for an MRI of her brain and spine and ultrasound of her kidneys Jan. 9th. We have no reason to expect anything but excellent results, but still my nerves are on edge....I guess they always will be.

We still have many friends in the middle of treatment. Please continue to lift them in prayer.

Thankful for the gift of Jesus!!
Jerri and Jeff

Wednesday, Nov.28th
I am sorry that it has been so long since my last update. Thank you to everyone who has been faithful to continue to check on Alaina. As our lives have become more normal, it has been very difficult to find the time to update. I’m sorry.

Alaina is getting stronger, happier, and healthier every day....Praise God! She is having NO difficulties. Even the problems that I’ve shared regarding her stomach and bowel problems have subsided. Thank you all for praying for this to get better. Once again the Lord has been faithful to answer our prayers!!! The only medication Alaina is taking on a regular basis is Bactrim (antibiotic), which is only 3 days/week!!! It is my understanding that she will continue to take Bactrim for several months after the completion of her treatment because her immune system is still compromised.

She is still eating very well and playing and laughing with Trent and Alise alot. Any of you that have been around her recently, know that she is not clingy to me at all now. She goes up to perfect strangers and gives them hugs. Initially, during and following treatment, she was very reluctant to be around others. It was as if crowds of people, especially other children (who were obviously more active than she), made her very nervous and uncertain....NOT NOW!!!! She gets right in there with them. Once again I thank God that she is more and more like a normal 3 year old (even when she is testing limits).

The Praise Party was fantastic!!! Thank you to everyone who was able to come. What a blessing it was to see so many people who were celebrating with us. We had a sign in sheet and a matted picture for everyone to sign, but we still weren’t able to get an exact count of how many came. Jeff and I estimate that it was somewhere around 250!!! Thank you to everyone who so willingly gave of their time to help us decorate, plan, clean up, etc. Thank you to Johnny Phillips and Top ‘O The River who donated food. Thank you to Glenn Williams and his band who gave of their time to play for us....It was great!!! We really were surprised at how so many of you came to spend the entire party with us!! You can never imagine how much that meant to us. We are so happy and it is wonderful to have so many of you that are happy right along with us. It has been and continues to be a long journey, but with all of you beside us, we gain tremendous strength!!! WE LOVE YOU ALL SO VERY MUCH!!!

I asked Trent what his favorite part of the party was. I really expected him to say, playing on the inflatables or something like that. His answer was, “When we let all those balloons go!!” That was definitely one of my favorites. As we all congregated outside, each of us holding balloons, and then to release all 306 of them (the number of days Alaina was in treatment). It was a tangible way to let go of the past year. It was more healing than I ever imagined it would be as we all hugged and cried and thanked God for Alaina’s healing. We will never forget that it was our Lord and Savior who ultimately saw Alaina through this past year!! God has so richly blessed us!!!

I have to mention something else that really blesses my heart. As we are out in the community...Wal-mart, restaurants, etc., I am touched by the people who approach our family (people we have never met), that say that they have been following Alaina’s progress....THANK YOU SO MUCH!! For strangers to take the time to keep up with a little girl, whom they have never met, and to pray for God’s healing touch, blesses my heart beyond words!!! We were in Wal-mart the other day and a precious lady came up to us very excited, saying that she had been reading our website throughout the year. Thank you Regina Vargus for loving our little girl. Thank you to the lady in the parking lot of Gadsden Regional who recognized us and told us of her prayers. Thank you to the lady last night at Logan’s Restaurant who said, “I’ve seen her picture. That’s Alaina, right? And she’s cancer free!” Please don’t hesitate to speak to us and tell us of your support. It is such a blessing and a constant reminder of how God’s people should stick together during a storm!!!

As we have gone through this Thanksgiving Holiday and are now approaching Christmas, I tend to dwell on how this last year has brought us blessings in the midst of turmoil. This year is so different from where we were last year. I think of all the families who have just recently received the devastating news that their child has cancer, those who are going through very uncertain days. My heart aches for them. Before all of this with Alaina, I am embarrassed to say, that I never thought about those spending holidays in the hospital, those grieving over their children’s pain....I do now. It reminds me to be thankful EVERYDAY. Every time I’m able to go to church, shopping, to the movies, enjoy time with family/friends. Because as I am enjoying blessings, there are others in pain/sorrow. Looking back over the times we were in the hospital, we only spent ONE major holiday away from home....that’s a blessing in itself!!

Just a little bit about where we were this time last year. On Nov. 27th (which would have been yesterday), we went for our follow-up appointment with Dr. Satchivi. Alaina received a good report as far as how she was healing from her brain surgeries, but it was from him that we first heard the diagnosis of Atypical Teratoid Rhabdoid Brain Tumor. Following our visit with him, we were sent to Dr. Reddy (neuro-oncologist), who really told us about how horrible this cancer really is, and the intense treatment it required. There we were, sitting in the room with a NEURO-ONCOLOGIST. You never think you will be discussing putting poison in your baby’s body. Alaina was feeling good, recovering well from brain surgery, but yet we weren’t finished. Dr. Reddy was very kind, compassionate, and spend what seemed like hours with us, as we tried to process everything. She warned us that anything we read on the Internet would paint a very grim picture, but that the treatment had been revised significantly.

On Nov. 29th (tomorrow) we were scheduled for an MRI of her spine and kidneys to be sure it had not spread to those areas....PRAISE GOD IT HAD NOT!!!

Please continue to remember Alaina in prayer. It is my fear that people will think since she is cancer free that she doesn’t need as much prayer....SHE DOES!! We have our next scheduled MRI on Jan. 9, 2008. Please start praying now that it will be CLEAR!!!

Horrified of the past, BUT Hopeful for the future!!!

Jerri and Jeff


Friday, November 16th
We are all doing well. The girls have a cold and cough, but otherwise...GREAT!!! We are finishing up with some last minute preparations for the BIG Celebration tomorrow!!!! We are looking forward to a fun-filled afternoon!!! We hope to see many of you there!!!

We are so thankful for how well Alaina is doing now compared to a year ago. I hope that I’m not boring everyone with all of my “this time last year stories”. It’s just what is consuming my thoughts right now. On Nov. 15, 2006, we had a post surgery MRI. Around 5:00 p.m., Dr. Satchivi returned to our room with the news that some of the tumor still remained and that he wanted to go back to surgery the next day...Thurs., Nov. 16th. I remember asking him, “Does it look like you will be able to get all of it?” This was the same question we asked before the first surgery and he could not say. Thinking I would probably receive the same answer, but also hoping for reassurance, I asked it again. His response was, “Yes!” Having learned his character, we knew he wouldn’t say it if he didn’t absolutely believe it. This was some relief, but I was a wreck knowing that my sweet little girl faced yet another risky brain surgery. It seemed at this time that none of our prayers were being answered. Not the way we had hoped. We prayed that once in Birmingham, they would find nothing...it was still there. We prayed that all of the tumor would be removed with the first surgery...it wasn’t. And now...another surgery! I recall going into the bathroom and crying until there were no more tears to cry. I felt that all of my dreams for Alaina were vanishing before my eyes. Everything was spinning out of control...my control. Of course, I feared the obvious...that she wouldn’t be strong enough to go through another surgery, but I also feared how disabled she would be after 2 brain surgeries. We had no doubt that Dr. Satchivi was the best surgeon we could have. We were very confident in him, so if he said that he felt we needed to go through this one more time....our answer was, “We’re with you.”

The surgery was scheduled for the afternoon of the 16th. They began around 4:45 p.m. Prior to the surgery, Dr. Satchivi once again was very willingly to allow us to pray with him. The separation from Alaina was a little better this time. Because of how hard it was the first surgery, they suggested that we allow them to give her a “don’t care drug”. Why this is not a standard procedure, I don’t know. It sure makes it easier on the parents and the child. Many friends and family were there again, remaining throughout the surgery, and staying with us until Dr. Satchivi came out with the news.....HE THOUGHT HE GOT IT ALL!!!! After 2 1/2 hours, I felt I could breath again. It wasn’t long before we were able to see her in recovery and then we were moved to the PICU again. She had no complications and the only thing they were giving her for pain was Tylenol....what an amazing little girl!!! We watched for any signs of problems...she was moving all extremities, talking, looking around, and drank 2 cups of juice that evening!!!

Although we didn’t understand why Alaina was having to go through so much, God still continued to show us that He was with her, and us, and that He loved us very much. Tonight, I thank God for His unfailing love. We love Him more each day and thank Him for carrying us during our weak times. During uncertain times, one thing is certain....He is our Father and He hurts when we hurt.

Thankful for the gift of Salvation,
Jerri and Jeff

Wednesday, Nov. 14th
Alaina currently is doing very well. She has a little bit of a cold and not eating quite as well, but otherwise, no complaints.

We are getting ready for Alaina’s big day on Saturday, as we celebrate God’s goodness. Her End of Treatment Praise Party is for everyone. We are not sending out invitations. We chose to put the invitation on her website instead, so everyone that has been praying for her (even those we haven’t had the opportunity to meet) would be invited. Please come and enjoy some refreshments, a blue grass band, inflatable activities in the gym (for all ages), and just some good fun and fellowship. At the conclusion of Alaina’s party, we will be releasing 306 balloons, representing the 306 days she was in treatment. We will be letting go of the past year and looking forward to the years to come, as we believe God has wonderful plans in store for Alaina.

On this day last year, Alaina was recovering in the PICU from her first brain surgery. She was recovering very well with no significant deficits. She was moving all 4 extremities, talking, waving, playing, and eating. We found out on this day that her CT of her chest, abdomen, and pelvis were CLEAR....Some wonderful news that we so desperately needed to hear!!!

Please continue to pray for our friends that are still going through treatment, those who are trying to find a new “normal” (like us), and also those who have lost there precious little ones.

Enjoying Seeing Alaina’s Fuzzy Head!!!

Jeff and Jerri

Tuesday, Nov. 13th
They came to our room around 7:30 a.m. Jeff, Alaina, and I, and both sets of grandparents were there waiting, and I think Jeff’s sister was there by this time. My memory of everything is so foggy. They let me carry her and hold her before they took her back. Jeff and I requested to talk with Dr. Satchivi before the surgery began. He graciously came. We were in the holding room...Jeff, Alaina, me, Dr. Satchivi, and a couple of nurses. Jeff did the talking for both of us and I held Alaina tightly in my arms. He shared with Dr. Satchivi a little about our faith and that we put Alaina, first in God’s hands, and secondly in his. Jeff told him, that during the surgery, he could know, without a doubt, that he was being lifted up in prayer. Then Jeff asked him if he could pray with him right then. I will forever remember how we formed a circle.....I was holding Alaina, Jeff on my right, and Dr. Satchivi on my left. Jeff had his arm around the Dr. on one side and I did on the other. After the prayer, Dr. Satchivi gave us a calm, peaceful smile and said that he would treat her as his own and left to prepare to save our baby’s life. I thank God that he was willing to have prayer with us that day, because the peace that was felt in that room got Jeff and me through the next 7 1/2-8 hrs. as we waited for the completion of surgery.

After a few minutes a nurse came to the room and said that it was time. She would allow me to carry her only to the large red line and then came the hardest thing I’ve ever had to do....Hand my baby to a perfect stranger, with Alaina crying, “Mama”. I did it quickly and without hesitation, Jeff and I turned and walked one way and the nurse and Alaina the other. As we walked what seemed like a mile, I could hear Alaina’s voice fading with every step. I wanted to keep hearing her. I wanted to hold her one more time.

Over the next 30-45 mins., the waiting room was absolutely flooded with family and friends. There were so many people, and the waiting room so small, that people were lining the hallway. I was given several gifts that were very special to me that day....an angel pin that I wore on my shirt from Betty Pruett and a prayer cross that I held tightly from Margaret Fails. They are two very special ladies in our church. I also met Carol. She was a friend of one of my very dear friends and she is a mighty prayer warrior and also a cancer survivor. She stayed for hours, leading the entire group of us in prayer every 30-1hr. Thank you Carol for being a very special angel sent to us that day. Thank you all for taking time to be there with us for so many long and painful hours. It’s times such as this that the presence of wonderful caring family and friends is priceless. There were many of you that I knew wanted to be there, but were unable...thank you for praying throughout the day (right where you were). I know that many who were with us were constantly on their cell phones giving updates. Thank you all for loving us so much!!!

Throughout the surgery, they would call us from the O.R. to give us updates on Alaina. Every time the phone would ring, I would grip the cross I held in my hand even tighter, and listen as Jeff talked with them. If you haven’t figured it out yet, Jeff is the calmer one of the two of us. I love you Jeff, and thank you for being the strong, loving husband you are, and for holding me up throughout all of this. Even when you felt weak, you were still strong for me!! Between phone calls from the O.R. and prayers led by our new friend Carol, I read 3x5 cards that Molly had written scripture on for me to draw strength from. Let me tell you, there is strength that comes from reading scripture in a time of crisis. Thank you Molly for the scripture you handed me throughout the day. It was such a comfort on that day, but also from time to time throughout Alaina’s treatment. I still have those cards. They have been very special to me over the past year!!!

During Alaina’s surgery, Dr. Reddy (Neuro-oncologist) and Allison (Nurse Practitioner) came to talk with Jeff and me. At this time, they really didn’t tell us alot, but gave us papers to read and sign if we were in agreement to letting them send the tissue removed for studies. Of course, Jeff and I signed without any hesitation. Everyone was talking cancer and malignancies, but us, we were still praying that the results would be benign. It was at this meeting that we were given a book about brain tumors and treatment. I began reading and was getting sicker by the page at what possibly lied ahead for us.

Alaina came through the surgery beautifully!!! Once in there, Dr. Satchivi said the tumor was into her Left Parietal and Occipital Lobes. He was very pleased with the outcome and said that he thought it was possible that he removed it all. They would perform another MRI the next day to see. She spiked a temp. of 101 a couple of times, had to receive a unit of blood, and a dose of steroid during the surgery. He sent several biopsies, all of which he said still looked malignant, but the final pathology report would reveal more detail and should be back in a couple of weeks.

When we first saw Alaina, as they wheeled her out of recovery, she was trying to open her eyes, holding our hands, and saying, “Mama”. Oh A Distant Memory

Jerri and Jeff

Monday, Nov. 12th
Today was when we met with Dr. Satchivi (Neurosurgeon) and were shown pictures (in 3-D) on the computer of Alaina’s tumor. (On the 11th Alaina had an MRI of her brain/spine and a CT of her chest, abdomen, and pelvis) I recall that Alaina was sleeping while Jeff and I, and our parents were in the hall with the Dr. Here was where we received many details. The tumor originated from the Choroid Plexus in the Left Lateral Ventricle. It was very deep and very large. Because of the location, he said we could expect some deficits, but we wouldn’t know the extent of the damage until after the surgery. Hearing all the possibilities of complications as a result of surgery, we asked were there any other options. He told us that really the only option was surgery. Dr. Satchivi informed us that two types of tumors grow from the Choroid Plexus...one benign...the other malignant. He said that the tumor had characteristics of a malignancy, so he wanted to attempt to remove as much as possible, rather than just biopsy it. Jeff and I had many questions at this time. It had been 2 days since she was diagnosed, so we had time for everything to sink in a little. He could not give us any guarantees about any thing. We asked if he felt he could remove it all? His response was, “I won’t know anything until I’m in there.” How long would the surgery last? He assured us that he would not stay any longer than 10 hrs., but the longer the surgery lasted the better, because it would mean that he was removing as much of the tumor as possible, safely. He said that he would stop any time he felt Alaina’s safety would be jeopardized. I think back to this conversation, and I’m amazed that Jeff and I had the mentality to actually be discussing our 25 month old daughter’s BRAIN surgery. I’ve said this before, and I will keep saying it...IT WAS GOD!!! Through all of your prayers, the Lord kept our minds clear enough to ask the questions we needed to ask and to stand upright while doing so.

I would like to say a word about Dr. Satchivi...He was GOD SENT!!! Many times, you’re asking your next question and the Dr. is turned heading out of the room. Dr. Satchivi took so much time with us. He was very caring, concerned, and compassionate, yet stated the facts in a very professional, confident way. You don’t get much better than that. Jeff and I felt very confident that Alaina was in very good hands from the very beginning. Thank you Dr. Satchivi for using your talent and skill and being so instrumental in saving Alaina’s life!!

Alaina’s surgery was scheduled for the next morning. It would be Dr. Satchivi’s first and possibly only surgery, depending on how things unfolded.

Now, after we got all of the facts and new that surgery was the next morning, we headed back to Gadsden to see Trent and Alise. We had no idea how everything would go during Alaina’s surgery or when we would be able to spend time with them. They were with Jennifer and Greg Edge (A.J., Eric, and Eli) and very happy. They had gone for Sun. lunch at Jennifer’s parents house, so we saw them there for a couple of hours. Some other friends, Jason and Kathryn Rogers (Jake and Hannah), came over to get Trent and Alise to go home with them. Thank you to Jennifer, Greg, Jason, and Kathryn, and all of our friends that so willingly and lovingly took Trent and Alise into your home and helped them adjust as much as possible to their world being turned upside down.....Kelly and Scott Moore (Will), Kim and Kevin Hill (Dani Rae and Ryan), Barb and Jared Coker (Abby), Paula and Jeff Hopper (Tyler and Abigail), Felicia and Glenn Williams, Jennifer and Brian Kilpatrick (Noah and Ben). Thank you all for taking such good care of them, getting them to where they needed to be, and taking them to special places. It was very difficult to be away from our other two children, but knowing they were safe with friends made it so much easier...WE LOVE YOU!!! There were so many of you that offered to help with Trent and Alise in so many ways...Thank you!!!

Upon returning to the hospital, we had many friends and family that were there. I won’t try to name everyone, but thank you for being there with us. I do remember that the room was full and Alaina was having a ball. It was hard to think that this, seemingly healthy child, had a tumor that took up, what looked to be 1/4 of her brain. April Gilbert took Alaina for many rides through the halls, in a rolling chair...she was laughing and playing and hugging on everyone....and ate like a little horse (McDonald’s cheeseburger, apples, and milk). Felicia Williams (my beautician) came to visit. Felicia was going to be the one to cut the girl’s hair for the first time. Since she was there, I asked her if she would cut a couple of curls for me. It was very special to me to have her cut her hair, rather than to think that her first cut was in the O.R., by a stranger, and me not be there. God cares about even the smallest concerns of a mother, doesn’t He?

Thank you all for enduring these long entries. As we have hit the “1 Year” mark, I have many details to share. Looking back now, I can see how the Lord worked. Thank you to Marie Barnes for telling me to write things down as they happened and as the Lord revealed Himself. I have seen first hand that the Lord is EVERYWHERE and in EVERYTHING!!!

This would be our last night with Alaina before her surgery. As Alaina’s parents, many thoughts ran through our heads that evening...”Would she be the same little girl mentally and physically?” “How would she look following surgery?” “How long would she be in surgery?” “Would we ever hear her talk again?” “Would she ever move the right side of her body again?” “Would her vision be greatly affected?” and, the big one “Would Dr. Satchivi be able to remove it ALL?” With all of this on our minds, this was one of the longest nights in our journey.

During these few days prior to her surgery we were blessed with Tracy. She was a wonderful nurse, who really took time to talk to and listen to a devastated family. Tracy has been very special to us from the beginning and still is!!!! Thank you Tracy for the love you show Alaina, but also for loving our entire family....WE LOVE YOU!!!

Around 4 a.m., I opened my bible. You’ve heard of people taking the Bible, opening it up, and reading the first verse they put their finger on, and it being a verse that was just meant for them at that particular time? Well, it didn’t happen that way, not exactly, but God did give me something that helped me in a way that only He could. Since it was Sunday, I hadn’t gotten to go to church or hear the Sunday School lesson, I decided I would read the lesson for that day. I pulled out my Sunday School book and low and behold...It was about Job!! What better story, in my opinion, to read at this particular time in my life. The very first sentence read, “WHY Did This Happen? How should I respond to various explanations for suffering and loss?” How many times have I listened to the story of Job? Suddenly this story had so much more meaning!! Until this point, my faith had never really been tested. Job had suffered tremendously, and from the human perspective, there was no obvious reason for his suffering. I read through 4 weeks of lessons and it was just what I needed. Did it instantly take all of the pain away, or change or situation? No, but what it did, was give me the strength I needed for the next several hours. It taught me that many times things happen that we don’t understand, don’t have answers for, and are uncertain of what is to follow...BUT my God knows!!! There is comfort in that!! A prayer at the end of one of the lessons stated, “Father, help me to remember that nothing will happen today that You and I cannot overcome together.” That gave me the peace that passed all of MY understanding. Thank you God for speaking to me early that morning, as I sat quietly in the restroom, crying, searching for answers as to why my baby had to go through this.

Later that day, after Alaina’s surgery, I shared with Jeff how interesting it was that our Sunday School lesson the day prior to Alaina’s surgery was about Job. Wasn’t that perfect timing on God’s part? Then Jeff pointed out the date on the book.....Fall 2005!!! It was last year’s lesson!!! It had been in my bible an entire year!!! The date on the lesson was Nov. 13th. Last year, the 13th was on Sunday, but this year the 13th was on Monday....the day of Alaina’s surgery!!! I will probably never remove this book from my bible, it was a reminder to me that God is always on time!!

Until tomorrow....The day of surgery

Blessed Beyond Words,
Jerri and Jeff

Saturday, Nov. 10th
It was a year ago today that our baby was diagnosed with a brain tumor. At this point, we had no idea what type of tumor. All we knew was that she had a very large tumor and we headed to Children’s Hospital in Birmingham. A flood of emotions fill my heart today. We’ve made it through this past year!! It seems like an eternity, but then again, it seems that this year has pasted so quickly. Jeff and I have discussed that it is hard to remember life prior to “the tumor”. It seems that we have been dealing with cancer all of her life. It is difficult to remember the Alaina we once knew, but from time to time, something will happen to trigger a thought of “normal”. I cherish those times.

Last night was a night of reflection for Jeff and me. We spent the evening together, just as we did last year. Trent, Alise, and Alaina spent the evening with my parents and Jeff and I watched “Facing The Giants”. Wow!! We didn’t realize how the Lord was preparing us for our giant....the very next day. As we watched the movie, I noticed that it came to the theaters in Sept.....was it a coincidence that it was Nov. 9th before Jeff and I saw it...we don’t think so. God has such a big plan. Bigger than we as humans can fathom. He had us right where He wanted us that evening, as we were reminded of His power and that nothing is impossible with Him. If any of you haven’t seen this movie, I urge to you do so. It deals with real life struggles, and the peace that comes from giving our struggles to God. God is good, even when life doesn’t seem fair. One thing that stood out in the movie, was that they made a conscious decision that they would praise God in the good times, as well as the bad. No matter what the outcome, they would praise and love God.

I remember when I made the conscious decision to give Alaina’s health to God. I say conscious, because it isn’t easy. It is something that I’ve tried to take back from God many times in the past year, thinking I had to get some control of the situation. The fact of the matter is, we think we are in control of our lives....we are not. We plan when we will get married...when we will have children...how many children we want to have...where we will work...when we will retire. We often leave God out of it. I have been guilty of thinking I have more control over my life than I really do. God can put us anywhere at anytime. The saying “Grow where planted” means so much more to me now. We are planted...right where God wants us. I give God many thanks for the life He has given me...in the happy times and the sad. It has been amazing to feel God’s power and His unfailing love since Nov. 10, 2006.

The evening before, Alaina had become quite sick. At this point, we knew that it was something more than just reflux or a hypersensitive gag reflex. I had gotten on the computer to see if I could get a piece of mind about what was happening. Up until this point, a brain tumor never crossed my mind. We thought, if anything, it would be a mild concussion. I looked up the signs and symptoms of a brain tumor, but found she only had 1 or 2 of the symptoms. Of course, last year, the 10th was on Friday. There are so may things that I can remember well, but so many that are a blur. I was at home, alone, just as I am right now. Jeff was working and we had planned that I would go pick up Alaina from my parents and meet him at the Gadsden Pediatric Clinic around 1:00 p.m. I called a couple of friends, crying, asking them to pray for Alaina that I felt something was bad wrong. It was as if the Lord was preparing my heart.

We were fortunate that our regular Pediatrician was at the clinic that day and we were able to see him. While we were talking with Dr. Griffith, Alaina was perfect..normal..no sickness..and very playful. I remember how happy she was. We explained everything to him and once again said that we relate her intermittent vomiting back to the fall she sustained on Oct. 21st. We were prepared to ask him to PLEASE order a CT scan, but this was something he suggested without us asking. I remember his words well, “We will do a CT scan to ease your minds. I really don’t think we will find anything.”

Feeling that everything would be fine, Jeff went back to work, and Alaina and I went for the CT scan. She ate a cereal bar, a sucker, enjoyed watching the fish in the aquarium. I, along with several nurses, held her still as they scanned her. My fears began to escalate as they returned wanting to do more scans with contrast. They said they saw something and wanted to get a better look. Of course, I was in agreement. My mind was racing..what were they seeing? No one would tell me anything. They all remained very calm, as I began to cry, “What are you seeing?” I remember one of the nurses saying, as she hugged me, “Everything will be okay.” What did that mean? I called Jeff and told him to please come be with us, that they saw something. Jeff got there, it seemed like within minutes. By this time, I was holding Alaina as she slept. The 3 of us sat quietly in the hall as people passed us, unable to make eye contact. We were given a sealed envelope with her scans in it and instructed to return to Dr. Griffith and he would explain everything.

We were officially in “shock” mode. And now is when everything becomes blurry for me. I just remember bits and pieces over the next few days. We entered the Pediatric clinic and were taken immediately to a room where we met with Dr. Griffith. His words were, “Well, it is more than what we thought. She does have a tumor.” I was holding her, looking at the scans in disbelief. It seemed as if the room was spinning. I just remember him saying, “This has taken us all by surprise. I have called a Pediatric Neurosurgeon at Children’s Hospital. He said you could wait until next week for an appointment in his office or come to the hospital now. I took it on myself to tell him to expect you tonight.” Jeff and I left quietly. We asked no questions. We didn’t fall apart. We called family and a few close friends. Alaina feel asleep in the car and remained asleep while Jeff and I packed a few clothes and left for B’ham. This was the longest night of our lives. By this time, I had talked with some friends, Jennifer and Greg Edge, about Trent and Alise staying with them a night or two. Shortly after we arrived at the hospital our pastor and his wife, Steve and Susie Trader, were there. We also had visits from several other church members, Lynn and Gerald Rogers, Scott and Kelly Moore. I can remember talking with others, but I can’t recall who it was. After a short period of time both mine and Jeff’s parents were there. Please forgive me if I’ve left someone out, but my memory of all of this has many gaps.

I will continue tomorrow....I’m sorry for the long entry today. As I said, I have many emotions. Thank you for letting me vent and bring some emotions to the surface. I love you all!!!

DON’T FORGET ABOUT ALAINA’S PRAISE PARTY NEXT SATURDAY!!!!!!

Jerri and Jeff

Thursday, Nov. 8th
It’s been a while since I’ve actually gotten an update posted. I’ve tried several times, but something always comes up before I complete it, then it is old news. I’m sorry for the delay in letting you all know that ALAINA IS GREAT!!!! Alot has happened since my last update on Oct. 26th.

We had a very good Halloween. I really wanted the girls to be a princess or something, but I got Elmo (Alaina) and Cookie Monster (Alise) instead. I got the costumes a couple of weeks before Halloween and the girls loved them. They have carried them on trips, slept with them, and even tried to feed them. We have more than gotten our money out of them. Trent went back and forth trying to decide between Batman or Spiderman. Spiderman won!!! We enjoyed going to our church for a wonderful time of eating, jumping, playing games, and being with friends and family. It was a time of reflecting as last year this was the last big, fun time we all had before Alaina was diagnosed. It was wonderful to see her having a good time after such a tough year.....God is good!!!!

Last Friday, Nov. 2nd, we were invited to come enjoy the Gaither Homecoming in Chattanooga. The theme of their tour this year is “Giving Back”. As many of you know, Gordon Mote, who so willingly gave of his time and talent, at Alaina’s Benefit Singing, also plays the piano for the Gaither’s. They shared Alaina’s story and how Gordon had helped our family. It was thrilling to hear thousands of people clapping as Bob (Gordon’s manager) announced that Alaina is CANCER FREE!!! Thank you to Bob and Gordon for making this happen for us. We had a great time!!!!

Sunday, Nov. 4th the kids got to enjoy Nemo On Ice!!! All 3 of them sat with mouths open, squealing with excitement. This was Alise and Alaina’s first time to experience Disney On Ice. Last year, Jeff and I took Trent, just to spend a little time with him.

Now, this brings me to Alaina’s Dr.’s appointment yesterday. All went well. Her WBC was around 3500 (still not normal, but they say it can take a while sometimes). Her Neutraphils, however are high enough that they are not worried about her being around others at this time. Her Hct was 30 (also below normal, but improved since last time her counts were checked), and her Platelets are normal!!!

We took Alise with us and plan to do so each time, as she is a wonderful comparison of where Alaina should be. Alaina weighed 32 lbs. (Alise 33 lbs.) and was 35 1/2 “ (Alise 37”).

We talked with them about how much Alaina is eating. Literally, she is eating “man-sized” portions at times. It’s not that we are looking for things to worry about, but we know that treatment can often times cause thyroid problems. They are wonderful about listening to us as the parents, and doing tests to ease our concerns. Thank you Allison for enduring my “list” of questions!! Ha! They drew additional labs to check Alaina’s thyroid, but we don’t have those results yet. If they notice any concerns, they plan to refer us to an Endocrinologist. Please pray that she is just “catching up” and that there won’t be any problems.

We also asked if Alaina would have any additional hearing tests. The Dr.’s answer was that if she hasn’t had any significant problems with her hearing so far, that we probably wouldn’t see any other big changes from the chemo!!! Praise God!!!

Alaina did receive the first of 2 flu shots yesterday. Last year, she only received the first one, so she has to have 2 this year. They also said that they rarely have the children repeat any of there vaccines, they just have them catch up with what they missed during treatment. Because of when Alaina was diagnosed, she hasn’t missed any shots, so as of now, she won’t have to make up any!!!

Unless we have complications or any concerns, our next visit will be Jan. 9, 2008 for her MRI of her brain and spine and ultrasound of her kidneys!!!!!!!!! Wow!! Although, very excited to go without appointments, it also sends me into a small panic. After a year with appointments almost daily, it’s hard to relax.

Alaina will probably have her central line removed sometime after her next MRI!!!! How wonderful it will be to hold her and love her without anything attached!!!! However, I think Alaina will miss her routine of flushing and cleaning her lines. She often times goes to get all the supplies before it’s time!! Oh, how I love that girl. It’s also very sweet how Trent and Alise want to help. We do let them help with flushing, but the cleaning has to be sterile, so we don’t take that chance.

After our clinic visit yesterday, we also had an appointment with Dr. Morris (GI Dr.). He seemed very pleased with how Alaina was doing and said we didn’t have to come back for a couple of months. We made our next appointment with him on Jan 9th as well.

Currently, Alaina is only taking a few medications....Bactrim (antibiotic) 3 days/wk. and Senna (stool softener) and Miralax (laxative) as needed. We are able to skip days of giving her the Senna and Miralax now, so that is an improvement!!

Everyday, things are seeming a little more normal, which is a great feeling, but I think Jeff and I will forever get a sick feeling in our stomachs around Halloween and Christmas. We feel the crispness in the air, see the decorations, participate in some of the same activities, and we can’t help but feel a sadness in our hearts. This time last year we had no idea what was growing inside our baby’s head. Tomorrow night (Nov. 9th), is when it all started to unfold last year. Jeff and I had a date night, while my parents kept the kids over night. We went to dinner and then to see the movie “Facing The Giants”. This movie would prepare us for the months to come, as we would find out the next morning the giant before us. After the movie, we called to check on the kids. Alaina was better at the time, but had been very sick earlier. Jeff and I decided then, that the next day we would take her back to our Pediatrician.

We have so many things to be thankful for and we are. God has been so good to us throughout this past year. Something we find we have to do daily, hourly, and often times minute by minute is turn everything over to God. I’m not going to tell you that we do this without a struggle. It is hard. There are times that the hurt is so deep and the concern for Alaina’s life so strong that I want to fold. That’s were your prayers come in to play. If we functioned on our own strength, we would have quit a long time ago, but because we have wonderful, godly, people praying for us.....we know that God will continue to give us the strength we need. You see, cancer never goes away. Once it enters your life, you forever wonder when it will show it’s face again. Now that treatment is over, Jeff and I are facing alot of emotions that we haven’t had time to deal with up until this point. We were in survival mode, actively fighting this disease, but now we are going longer between appointments and waiting for each MRI to reveal how well the treatment is working. The fact is that this type of cancer usually comes back, and when it does it is fast. It is very hard to type those words, but that is what statistics tell us. I want each of you to understand what we have been told so that your prayers continue. As each year passes, the probability of relapse lessens, however it won’t be until she is 5 years cancer free that she will be considered a long term survivor. It is our prayer that as you see Alaina in the days, months, and years to come that she be a constant reminder of God’s goodness and His grace and mercy. We realize that NOTHING is too big for God, but we have those human emotions that bog us down sometime. Miracles are still a huge part of what God is all about!!!!

We hope to see you all at Alaina’s Celebration Party!!!
Jeff and Jerri

Friday, Oct. 26th
We are doing great!!! Alaina couldn’t be any happier. She runs around the house laughing and playing with Trent and Alise. Things really are getting back to normal. Alise and Trent don’t treat Alaina any differently than they do each other, which means, I’ve had to break up a few arguments. Alaina doesn’t hold back either....she is making up for lost time!!! All in all, they are all very happy to be back together.

Alaina is really packing on the pounds!!! Often times, she eats more than Alise or Trent. It is wonderful to see her really enjoying her food. That’s the way all 3 of our kids have always been. They get it from their mother....we love our food!!! We weighed the 2 girls yesterday and Alise was 34 lbs. and Alaina 32.7 lbs.!!!!

We had an appointment yesterday with Alaina’s Radiation Oncologist, Dr. Fiveash. All went very well and he was extremely pleased with the progress she has made. He did mention that he noticed some “enhancement” on the last MRI (Oct. 2nd), that he didn’t see on the July MRI. He said that really he feels that it is just effects of the treatment that she has had rather than anything of concern. He will be reviewing her MRI’s every 3 months as well, just to keep a check on things. The way Jeff and I feel about it is that the more Dr.’s reviewing her scans, the better!!! We don’t have to return to Dr. Fiveash until Oct. of NEXT year!!!

I did talk with Dr. Morris, Alaina’s GI Dr., a few days ago regarding her x-rays. He said that everything looked great and that there were no concerns. We will see him again on Nov. 7th for a follow-up. For now, Alaina’s practically painfree!!!! We continue to give her a stool softener and a laxative on a regular basis. Hopefully, we can begin to taper off of the medicines, as her diet is improving everyday. She is eating a variety of fruits, raisins, veggies, etc.

Along with seeing Dr. Morris on Nov. 7th, we also have a regularly scheduled appointment with Dr. Reddy (Neuro-oncologist). We have no reason to expect anything but good news.

We are blessed and every day we realize more and more how blessed we are. We wouldn’t have chosen this road for our family, but through it all we have seen the Lord work, we have meet some wonderful new friends, and we have realized how every day is a gift from God!!!

Thank you for your prayers. Please continue to pray that Alaina will remain cancer free and that the effects of her treatment will be minimal.

Loving the Laughter Around Our House,
Jerri and Jeff

Monday, Oct. 22nd

WHAT A WONDERFUL TRIP!!!!! We got back home from the Lighthouse Family Retreat last night. We had an unbelievable time. We left for Watercolor early Wed. morning (5:00 a.m.) and made perfect time. We arrived for check-in around 12:00 noon and were greeted by a group of smiling people. We had what they called “Family Partners” (one per child) who helped us the entire time we were there. They helped feed, entertain, and play with the kids, as well as helped us unload the car, get to our house, do our laundry, etc. Our Family Partners were wonderful and Trent, Alise, and Alaina felt comfortable with them from the beginning. Thank you Lynn, Steven, and Carla for your hard work in making this such a special time for our family. I had really been concerned with how Alaina especially, would react to being away from us. I knew Trent and Alise would be fine. Within minutes, Alaina was playing, laughing, hugging, and pushing me away to get to Steven!!!!! I knew right away, this was going to be a relaxing and fun time for all of us.

They had wonderful activities planned for the kids during a time known as “Flip Flop”, while all the parents went to “Common Ground” meetings. This was a time for the parents to share their stories and connect with each other. It was a very safe and comfortable place to talk. All of the other parents became friends immediately as we laughed, cried, and help each other heal. There were 11 families (us included) that were pampered during our 4 night/5 day stay. There were 6 states represented. We are all in different places in our treatment....some of us have completed treatment, some are in maintenance, and some in remission. It really didn’t matter where we were, we all could relate to what everyone else was experiencing...the heartbreak of having a child with cancer.

The weather was beautiful on Wed.....rained on Thurs. and Fri.....and was sunny again on Sat. and Sun. The rain didn’t hinder the amount of fun we had at all. We were able to relax a little and they still had fun activities planned. Some of the activities we were able to enjoy were Beach Olympics, swimming in the pool, riding bicycles, singing, morning devotions. The kids got to decorate gingerbread houses, play, watch a movie outside, eat pizza, and the highlight of the trip was the talent show the kids had on Sat. night. We had “Parents Night Out” and went to a restaurant there in Watercolor called “Fish Out of Water” and had a fantastic meal. Thank you to the staff at Watercolor for providing this for us. All of the mothers experienced a wonderful time of relaxation, as we were given foot, hand, and neck massages, while sipping on iced coffee and eating a few snacks. Thank you to all the volunteers that were so willing to provide such a time of stress-free relaxation to us mothers...You made us feel so special!!!!


The facilities were outstanding and would not have been available without some very wonderful people so generously allowing strangers to stay in their homes. We never met the owners, but are so thankful to them....What a blessing!!!

I have to share something which only the Lord could orchestrate. Several months ago, my mother found the website of a little girl, Julia, also with an ATRT brain tumor like Alaina. She and I began following her story, but had never contacted Julia’s family. A few days before we left for the retreat, I was reading Julia’s site and decided to email her parents and tell them that we would like to try to meet them sometime, or at least talk on the phone. Our stories have so many similarities....Julia is a twin...they are only 8 months older than our girls...Julia was diagnosed only 6 months prior to Alaina....both of our girls experienced a fall which we feel expedited the diagnosis. Since our families live only 2-2 1/2 hours apart, Jeff and I were excited about the possibility of actually meeting another family with the same diagnosis. Tues. night, before we were to leave the next morning for the retreat, my mother calls me to ask if I had read Julia’s update. With all the last minute things to do before our trip, I had not been able to get on the computer. My mother, in tears, informs me that Julia and her family also have a trip planned.......guess where they were going??? THE LIGHTHOUSE FAMILY RETREAT!!!!! Our families not only were able to meet, spend time together, and share our journeys, but they had put us in the same house!!!! Our God provides what we need at just the right time. The Pinotti Family, in just a few shorts days, has become very dear to us. We are thankful that God put us together. Please pray for Julia. She has an MRI scheduled for Nov. 8th. If any of you would like to follow her story, her website is www.caringbridge.org/visit/juliapinotti

I could go on and on about what a great time we had. I do want to say a little about how this retreat came to be. Melinda (a Pediatric nurse), who was also on the retreat with us, had a vision of providing a retreat with a mission to serve children with cancer and their families at a seaside retreat and help them to laugh, restore family relationships, and find hope in God. Melinda......let me say that you accomplished your goal with us.....IT WAS EVERYTHING WE IMAGINED AND MORE!!!! Thank you...Thank you...Thank you!!! The Lord is using you in a mighty way to help heal hurting families....We love you!!!!

Thankfully, there is not alot to say regarding Alaina, except that she is doing absolutely wonderful!!! Her pain is much better. Dr. Morris (GI Dr.) and I have been playing phone tag, so I haven’t gotten the results on her x-ray yet. I plan to call him again tomorrow.

Last week, they took her off Diflucan (anti-fungal). She is only taking Bactrim, Senna, Miralax, and Culturelle!!!!

We went to Rainbow Ped. today and received excellent news on her blood work. WBC = 3400, Hct = 27.9, and platelets 181,000. Everything but platelets is still a little low, but we received a call from CH today saying that her counts had recovered enough that we didn’t have to get them checked again until our next clinic visit....Nov. 7th!!!! PRAISE GOD!!!! I also weighed the girls today...Alaina 31.6 lbs. and Alise 33.2 lbs.!!!!!

Physically, Alaina looks great...chubby face....rosy cheeks.....good color...eyelashes are starting to grow....stubbly head....and A GREAT BIG SMILE!!!!

We choose to believe that our Lord and Savior has healed Alaina and we would like for anyone who can to come celebrate with us at her Post Treatment PRAISE Party!!! It will be held at our church, Dwight Baptist, on Nov. 17th., from 3 pm-6pm. We will be posting more info. a little later. Until then, please mark your calendars and plan to help us celebrate that Alaina is CANCER - FREE!!!!

I’m sorry that I was so long winded, but I really appreciate everyone keeping up with us and loving us the way you have. Please remember the kids that we met on our retreat. They and their families need your prayers...Jonah 5 yrs.(Osteosarcoma), James 11 yrs.(Acute Lymphoblastic Leukemia), Florence 10 yrs.(Acute Myelogenous Leukemia), Michala 9 yrs.(Angiosarcoma), Zoe 7 yrs.(Acute Lymphoblastic Leukemia), Tierra 5 yrs.(Wilms Tumor), Logan 5 yrs.(Leukemia), Julia 3 yrs.(ATRT brain tumor), Mitchell 7 yrs. (Acute Lymphoblastic Leukemia), and Drew 7yrs.(Medulloblastoma).

Also, please continue to pray for all of our other friends that we’ve mentioned in previous updates. It breaks my heart that our list of friends battling cancer continues to grow.

Blessed by God’s Goodness,
Jerri and Jeff


Saturday, Oct. 13th
Hello to everyone!!!! We are having some very good days!!! We took the girls for their 3 year old well visit yesterday. It felt so good to take both girls together for a WELL Dr.’s visit. We saw Dr. Rutland. We really like him. He took time to talk with us about things concerning both girls. He feels that we should see an Ophthalmologist about Alaina’s vision. I think I’ve mentioned before that we feel she has a field cut from her brain surgeries, and during his exam yesterday, he felt the same way. Also, he discussed seeing an Endocrinologist soon. I know they have mentioned this in Birmingham, but we haven’t discussed when this would take place. Dr. Rutland said that one of the biggest effects that he has seen with children who have had chemo and radiation is problems with growth, especially in height. Right now, Alise measured only 1 inch taller than Alaina and only 3 lbs. heavier!!!!

Something that has been a concern from the beginning, is having Alise tested just for our peace of mind, and even Trent, but especially Alise since she and Alaina are identical. Dr. Rutland said that all the studies out now, the Journal of Pediatrics, etc. discourage having CT scans unless it is absolutely necessary, because of the amount of radiation that is involved. He feels we should further consult with Dr. Reddy regarding this issue. The other alternative would be to have an MRI, which wouldn’t have the radiation risk, but would have the risk of being put to sleep. Jeff and I will talk with Dr. Reddy, weigh our options, and then trust that the Lord will give us a peace about what to do.

Thank you all for your continued prayers, cards, phone calls, love gifts, emails, and visits. Please continue to remember all of our friends that are at different stages in treatment and recovery from treatment. They have all become very special to us!!!

Praising God Daily!!!!
Jerri and Jeff

Thursday, Oct. 11th
The girls had a great birthday!!!! We had a small party with our family and had a wonderful time. The girls went to bed for a nap (sleeping 2 1/2 hrs.!!!) and when they got up, I had the dining room decorated with BARNEY!!!! They were both SO excited. It was one of the best times we have had lately. To see them both so happy and smiling ear to ear saying, “Barney Birthday” (in their own words of course) was the greatest. We ordered Pizza Hut pizza and they loved it. Alaina ate 1 1/2 pieces of cheese pizza!!!!! We had to have ketchup to dip it in, but what ever works. She has never eaten pizza. Even before she was sick, she wouldn’t eat it.

We made it to CH this morning for her x-ray of her abdomen to see if she had passed all of the rings/markers. We haven’t heard from the Dr.’s office yet, but maybe tomorrow. We went by the clinic at the hospital to have counts since we were already there. Her counts have come down considerably since we stopped the Leukine shots, but this is something we expected. WBC = 2730 (was 8300 on Monday), ANC = 1400 (was 5,000), Hct = 24 (was 26), and platelet increased at 115,000 (was 53,000).

I have to say a little more about Alaina’s appetite......IT IS GREAT!!! She is now on a chicken and french fry kick.....or should I say, she likes a little chicken and fries with her ketchup!!!! She has eaten as many as 8 chick-fil-A nuggets at a time!!! She is also enjoying banana pancakes for breakfast, eating sometimes 3-4 at a time. We are so thankful that today she weighed over 30 lbs.!!!!!! Thank you all for praying about her appetite. We were very worried going into this final round.

While at clinic today, we saw Meredith Dyer and her mother, Ginger. Meredith looks great and is so happy!!! It was wonderful to see them. Please continue to pray for her. They were packed and ready to be admitted to continue with chemo, but her counts weren’t where they needed to be yet. They return for counts on Monday.

We also made a quick visit to 4 Tower (our home away from home) and saw some of our wonderful nurses. We love them all so much and can’t say enough how blessed we have been to have them walk with us throughout Alaina’s treatment. We also checked in on our sweet Carolyn. She is in with fever and a gram + infection. It looks like they will be there receiving antibiotics and waiting for some neutraphils. Please pray for them. Days turn into weeks sometimes before neutraphils start kicking in.

We are very excited about an upcoming FAMILY trip next week. The Lighthouse Family Retreat provides this get-away to children with cancer and their families. We will be leaving Tues. evening after Jeff gets off work, traveling a few hours, spending the night, traveling a few more hours Wed. morning to Santa Rosa Beach, FL. Check-in time is 12 noon. We will not return home until Sunday!!! We are looking forward to spending quality family time, as well as meeting other families and enjoying the activities they have planned for us. They have told us that all we have to do is bring ourselves and our clothes.....they take care of everything else!!!! WOW!!!

Except for having bloodwork every few days and occasional phone calls from clinic, we are living life pretty normally!!! We are so blessed!! Every time I see the kids together, playing and having fun and watch Alaina laughing, running, climbing, sliding, swinging....I say, “Thank you Lord for giving us our healthy, happy little girl back!!!!” Yes, through all of this, we have had a wonderful medical team. We are thankful for their knowledge about this type cancer and their ability to give Alaina the best treatment possible, but God and only God has healed her!!!! Please continue to pray for God’s protective hand on Alaina as her little body continues to fight!!!

Living life with a new appreciation for the blessings God gives!!!!

Jerri and Jeff

Monday, Oct. 8th
NO MORE LEUKINE SHOTS!!!!!! We went to have blood work this morning before taking Trent to school. Counts were better, but still not completely normal. WBC = 8300 with an ANC of over 5,000, Hct = 26, and platelets = 53,000. So, one more thing behind us!!!!!! Her counts will now just take time to recover. It is felt that the shots have done all they can do to help at this point.

We still have to flush her lines with Saline and Heparin daily and clean her central line 3x/wk. The oral meds we are giving her are Diflucan (anti-fungal), Bactrim (antibiotic), Senna (stool softener), Dicyclomine (abdominal spasms), Miralax (laxative), and Culturelle (probiotic). In addition, we continue to use Biotene and Peridex to clean her mouth. This is something that we have done 1-3x/daily throughout her treatment to help prevent mouth sores. For all that she has been through, we really feel blessed that this is all the special care she needs!!!!!!!!!!!!!!

Initially, we were told that Alaina would have to keep her central line for at least 6 months following treatment, but Dr. Reddy told us last week that we may be able to remove it sooner. I can’t wait to hold her and play with her without anything attached!!!!!!!!!!! She has been so good not to pull on it (and so have Trent and Alise).

Well, our girls will be 3 YEARS OLD Wednesday!!!! I can’t believe that they are growing up so fast. We are planning to have some family time with grandparents, great grandparents, aunts, uncles, and cousins. It will be great to be with family that we haven’t been able to see as much this year. The girls are loving Barney, so that will be our theme. I’m so glad that we are finished with treatment and Jeff and the kids and I can be together for Alise and Alaina’s birthday. Last year at this time, we had no idea what we would face in one short month. It was exactly one month after their 2nd birthday that Alaina was diagnosed. Birthdays and Holidays will forever be special after enduring the past year!!!

Many of you have asked what Alaina is like now. I imagine that the picture you may have in your mind is much like what we were expecting at this point also...... a thin, unhealthy looking, unhappy little girl, with no hair, and not looking anything like her twin sister. We are pleasantly surprised at how well she has recovered. She runs around laughing, teasing, playing, and yes, even arguing with Trent and Alise!!! She is full of energy, gaining weight, and HAPPY, HAPPY, HAPPY!!! Now, the “no hair” part is correct, but it is growing (slowly). I try to keep a hat on her, but after a short amount of time, she starts saying “Hot!!” and pulling it off. She only pulls that little trick while we are either indoors or in the shade. She knows that she HAS to wear it in the sun. When Alaina has her hat on, she looks alot more like Alise, but otherwise there is a big difference in appearance (I never really thought about how much of a difference hair makes).

Alise and Alaina are really making up for the time they have been apart. We put them to bed and sometimes it is HOURS later before they actually go to sleep. They are giggling and talking and passing blankets and stuffed animals back and forth to each other. Alise will get quiet and the next thing I hear on the monitor is Alaina calling her.....VERY LOUDLY and then they start jabbering all over again and singing their ABC’s. Last night, it was 11:30 p.m. and they were going strong, I went in their room to find a pile of stuffed animals and blankets between their beds, both of them standing up, and neither of them had pants or socks on. When they saw me, they smiled and started jumping up and down on their beds. It is exactly what I always thought they would do growing up together.....Thank you Lord that they are enjoying each other. Last year, I didn’t know if this day would ever come!!!!

Trent is doing extremely well. He is learning so much in school and loves Mrs. Nora (we all do). He is very excited about skating tomorrow. It will be his first time. He is ALL boy....loves Spiderman, Batman, Power Rangers, cars, playing ball, and getting dirty. He is getting better (at times) in practicing patience with his sisters, but it’s hard when you are outnumbered.

I’m sorry this is such a long update. Thank you all for taking time to continue to check on us. I’ve said it before, but you all will never know how very blessed we are by having you close to us during this time!!!! The ministry that you all have been to our family has been unbelievable!!!

Enjoying NORMAL days!!!
Jerri, Jeff, Alaina, Alise, and Trent
 

Tuesday, Oct. 2nd
WE ARE
CANCER-FREE!!!!!
We had our MRI of the brain and spine and Ultrasound of the kidneys. Dr. Reddy said that everything couldn’t look any better!!!!! We also went for a consult with Dr. Morris (GI Dr.). He seems to think that we are on the right track, but wants to perform some additional tests....a Breath Hydrogen Test, which will test her lactose tolerance, as well as another test where I will break open a capsule that has about 15-20 tiny rings in it, put it in her food, and 5 days later go for a KUB (x-ray) to assess the mobility of her digestive system. It sounds terrible, but these rings are so tiny. These tests have been scheduled for next Thurs. (Oct. 11th). He also told us to stop the Zantac and give her additional fiber in her diet.

We will continue to go on a regular basis to Rainbow Ped. Clinic for blood work until she has completely recovered. There is still a possibility that she will require additional blood products within the next few weeks or months. We are to continue giving the Leukine shots for several more days to increase WBC. Unless we have problems, it looks like we won’t have to return to see Dr. Reddy for about a month!!!!

This time last year, we had no idea what we were destined to face. The Lord has seen us through!!!! We praise Him, and Him alone that today Alaina is cancer-free!!!!

Thank you all for your continued prayers.....Thankful for a God of Miracles!!!!
Jerri and Jeff

Saturday, Sept. 29th
Yesterday was a great day!!!! We went to Rainbow Ped. Clinic around 9:30 a.m. just in case we had to go to B’ham for blood or platelets. Her counts were so much better than we expected...WBC = 2100 with an ANC of over 1000, Hct = 31, and platelets = 26,000. Of course all of these counts are still low, but the good thing is that she is recovering very well.

We are planning to enjoy the next few days together. Jeff will be off Sun., Mon., and Tues. As I mentioned in a previous update, Tues. is going to be a big day for us. Alaina will have an MRI of her brain and spine, an ultrasound of her kidneys, blood work, as well as go for a consult with a Gastrointestinal Dr. Please pray for Alaina.....that she will receive EXCELLENT results and will be CANCER- FREE!!!!

Have a wonderful weekend!
Jerri and Jeff

Tuesday, Sept. 26th
We are home!!!! How wonderful it feels!!! Alaina slept better last night than she has in many days. We enjoyed last night....AS A FAMILY!!! After eating supper, Jeff, the kids, and I all went outside and played on the swing set, went for a short walk, laughed, hugged and kissed each other. We are more and more thankful every day for our family. I awoke this morning thankful...thankful for 3 wonderful children, a very loyal and loving husband...thankful that Alaina was excited about going home...thankful that Trent and Alise were happy to see us, that Trent was silly with happiness and instigated several “group” hugs. I am thankful that today I was able to take Trent to school and pick him up...thankful that I have enjoyed hearing the laughter of my children, that Alaina is able to play normally with her brother and sister....I’m thankful for the wonderful teachers at Trent’s school that voluntarily come to the car to get him and bring him to the car when Alaina’s counts are low...thankful for the employee’s of Jerry’s Pharmacy who bring Alaina’s medications to the car since I’m unable to bring her in. I’m thankful that I am able to see God’s love through so many areas of my life!!!!!

Today, the kids and I have enjoyed life. I have found a new happiness as I act silly with my kids. A year ago, I would have been embarrassed to pull up to a red light beside someone while, singing, dancing, clapping with my music loud, but this morning the kids and I celebrated, as we sang kid’s Bible songs. So, let me warn you, if you see a gray Honda Oddyssey riding down the road with alot of arms waving, hands clapping, singing, and maybe the music turned up a little loud, it’s probably the Atkins. It feels really good to turn loose like that....you should try it!!!

Alaina received platelets again yesterday before we left the hospital, as her platelets had dropped again to only 20,000. Hct was 26 and WBC had increased to 520 with an ANC (absolute neutrophil count) of 90. Alaina is still very at risk for infection. Her ANC needs to be 500 or greater before we can breathe a little easier. As much as we would like to begin life normally again, we will probably have to continue to be very careful about exposure to others for another few weeks.

We are excited that her menu has changed a little. She still wanted chicken casserole for dinner last night, but today she hasn’t mentioned casserole and has eaten oatmeal, a couple of raisins, and Chick-fil-A nuggets (almost 3!!!).

We have to go to Rainbow Pediatrics this Friday to have her counts checked again. If everything is moving in the right direction, we won’t have to return to CH until Tues. This will be a BIG DAY for us. Alaina will have another MRI of her brain and spine, as well as an Ultrasound of her kidneys (this is per mine and Jeff’s request as ATRT has been known to return in the kidneys). We will also be seeing Dr. Morris (GI Dr.) for a consult because of the pain Alaina has been experiencing. It will be a very long day for Alaina, so pray for her strength. We have to be in clinic at 8 a.m.

I doubt I will update until after our counts are drawn on Friday, unless something new arises. Hope you all have as wonderful a day as I’ve had!!!! We love you all and are very blessed by your thoughtfulness and prayers!!!

Celebrating NO MORE CHEMO and hopefully NO MORE HOSPITAL ADMISSIONS!!!!!!
Jeff, Jerri, Alaina, Alise, and Trent

Monday, Sept. 24th
WE HAVE 27 NEUROPHILS!!!!!!! It is a far cry from where it is supposed to be, but it sure beats 0. In order for her not to be considered really high risk for infection, neutrophils need to be 500 or greater. Please pray that they continue to move in the upward direction.

WE ARE GOING HOME TOMORROW!!!! Alaina will finish her antibiotics tomorrow and then we are homeward bound!!!

Hopefully, the next update will be from home!!! Thank you all for keeping up with us.

Homesick,
Jerri and Alaina

Friday, Sept. 21st
Heaven has welcomed another precious child. Andrew Long, who has been fighting cancer for several years, is now in the arms of our Lord and Savior, Jesus Christ. We were all praying that he would be healed on earth, so we are all very sad for our lost, but today, he is pain free, happy, and healed!!! Please pray for Anne, Bruce, and Sarah as they adjust to living without their sweet boy. If any of you would like to leave them a message of encouragement, his site is on our links.

Sometimes the reality of everything hits me and hits me hard. Compared to a lot of children up here, Alaina is doing very well. It really makes me sick at my stomach sometimes at what these kids go through. I feel sometimes that this is all just a bad dream and that I’ll soon snap out of it and everything will magically disappear. But, I awaken every morning, go to sleep every night, eat every meal, to the thought of cancer and its destructiveness. We are at the end of treatment and the beginning of Alaina’s life as a cancer survivor. For a long time, I couldn’t talk about the future because I had a heavy cloud over me wondering if Alaina would be a part of our future, but now, without thinking, I talk about when she gets older, her going to school, think of our 3 children growing up together. It’s almost as if the Lord has given me a peace about the future…I’m sure it’s from Him, because if I stop and focus on the statistics instead of focusing on God, I find doubt beginning to creep in. We are now apart of the “cancer” community forever. I have decided I can face it head on or I can spend the rest of my life wishing it weren’t true.

Alaina’s counts just haven’t improved. WBC = 130, Hct = 23, and platelets = 9,000. Today we received our 5th platelet transfusion so far this round. She was once again pre-medicated with Tylenol, Benadryl, and steroids. She did great. I’m thankful for our nurses, Jamie and Susie, who have given her platelets a couple of times since she had a reaction. They are very sensitive to my nervousness and stay with us the entire time….Now that’s wonderful nurses for you!!!! But, of course, they are all wonderful up here.

I figured it up today and since Alaina began her treatment, she has received a total of 13 blood transfusions and 21 platelet transfusions. That gives you an idea of how much these children need blood products while fighting cancer. I had no idea until now, just how important being a donor really is and that it truly saves lives. If any of you are wondering where to go to donate, there is going to be another blood drive Sept. 25th at Rainbow City First United Methodist Church. I don’t know times yet, but will post them soon.

For the past few nights, Alaina and I have been going downstairs and walking around in the lobby, going up and down the huge flight of stairs, looking and the pictures, the big cow, and the fish and birds hanging from the ceiling. She has a great time and there aren’t as many people around, so I don’t have to worry so much about contact with others since her counts are so low. Last night and tonight we ventured out even more and walked outside a little bit. This, by far was the most fun for her. She kept saying, “I outside”. It’s amazing what a little fresh air does for someone (even a 2 yr. old), when they’ve been indoors for almost 2 weeks.

Today, I was blessed by a very important phone call. Jeff called from his cell phone saying that Trent had something he wanted to tell me. Trent got on the phone and said, “Mama, guess what I did, all by myself?” I was expecting something like, “I picked up all my toys”, or “I turned a flip”, or something along those lines. To my surprise, he said, “I asked Jesus into my heart!!” Alaina and I were in the activity room and I just couldn’t contain my tears of joy. My little boy had told me something that I’ve been praying about since he was a baby!!!! In the midst of our lives being turned upside down the Holy Spirit has been pulling at Trent’s heart. God is good and continues to give us the encouragement and strength we need. Jeff and I are beginning to see part of the rainbow at the end of our storm. Tonight I thank the Lord for the gift of salvation and for allowing Trent to be sensitive to that “still, small voice.”

Celebrating Eternal Life Through Jesus Christ,
Jerri and Jeff

Thursday, Sept. 20th
Today was day 10 of this admission. We are doing much better today. Last night was a much better night with about 5-6 hrs. sleep. She didn’t cry through the night at all!! We have done a lot of walking the halls and playing in the 3rd floor activity room today. She also took a 2 ½ hr. nap and when she awoke, she was happy…not crying!!!

We still are at very high risk for infection as her ANC (absolute neutrophil count) is 0, WBC is 130, Hct hasn’t changed much since yesterday, and platelets have dropped again at 18,000. It looks as if another platelet transfusion is in our near future.

Jeff, Trent, and Alise came to visit tonight!!! Alaina and I couldn’t wait!!! We hadn’t been able to see them for 6 days!!!! We met them in the hall and Alaina practically ran to them and of course they were running to her. It’s really great to see how close the kids are to each other. Trent was telling all of us that he loved us, the girls were hugging each other, and Jeff and I were beaming with pride. We all went to see the clowns put on a puppet show. Here’s how it went initially….Trent was excited and loved every minute, Alise and Alaina both were crying. Alaina stopped after a few minutes and began enjoying watching the clowns, but Alise was very stand-offish for about 30 mins. I have been telling you all how much Alaina is changing and maturing (just in the past few days), well, so is Alise. She is talking much clearer, carrying on good conversation, making sentences. She is changing in many ways, but one way that hasn’t changed is that she is still very much a “Daddy’s” girl. It feels so wonderful for us all to be together. I hated to see them go, but maybe we will be home in a few more days.

I have several updates about some of our friends….Meredith Dyer is here with us receiving more chemo. I had mentioned in a previous update that she would be having tests and scans this week. They received great news, so we are praising God for that. Please visit her site for specific details at www.caringbridge.org/visit/meredithgracedyer  Addison Sewell went home today after receiving her LAST chemo!!!! You can visit her site at www.caringbridge.org/visit/addisonsewell  We have just recently gotten to know her and her family. They are wonderful folks and we rejoice with them as they get their life back to normal!!!! Janna Hamilton received good news also from her MRI/clinic visit this week. Her site is www.caringbridge.org/visit/janna  Carolyn Thompson is still experiencing some chemo related side effects and had to receive transfusions today in clinic. Her site is www.caringbridge.org/visit/carolynthompson  Owen Lyons will be receiving Botox injections soon, but continues to progress well and isn’t having as many seizures currently. His site is www.caringbridge.org/visit/owenlyons  Claire Devins is having a hard time keeping her counts up. Her ANC is 0 at this time. Pray that see can remain infection/fever free www.caringbridge.org/visit/clairedevins  We have met many new friends this admission. Please pray for Anna Beth, Katrina, Ian, Malik, Jordan, and Lily.

Thank you all for remembering to check on us. Your emails, calls, cards mean so much. I’m sorry that we’ve had a difficult time responding to you all. Please know that it is only out of fatigue and mental exhaustion and not because we are unappreciative. You all have carried us through the most devastating and painful experience of our lives.
Thankful for Faithful Friends and Family,
Jerri and Jeff

Wednesday, Sept. 19th
Still neutropenic. Alaina’s WBC = 130, Hct = 26, platelets 36,000. She has been in more pain last night and today than she has our entire stay. The Dr.’s ordered an x-ray of her abdomen this morning. They found that she had a significant amount of stool and gas that she has been unable to pass. We gave her Miralax and that has helped significantly.

Our two biggest prayer requests at this point are that she will soon have neutrophils and that she will be pain free.

That’s about it today. I know you all find it surprising that I’m so short winded. Hopefully, we will have better news tomorrow. We appreciate everyone’s continued support and prayers!!!

Missing Home,
Jerri and Alaina

Tuesday, Sept. 18th
I’m trying to update a little earlier in the day when I get a chance, so everyone will know things a little sooner. The only way I’m able to update now is because our speech therapist is in the room playing with her.

We had an extremely rough night last night. Her pain was about the worst it’s been in a while. Around 12 -1 a.m. we were walking all over the hospital, in the lobby, up and down stairs, etc. trying to get some relief. As long as she is up and moving, she is better, but as soon as she lies down to sleep or rest….the pain hits. She woke up crying all through the night every 45 mins.-1hr. We are giving her Tylenol and gas drops, which help some. We don’t really know what is going on. We think that it is terrible gas pains, but we can’t do a lot of tests at this point because her counts are so low. The chemo that she has had is very rough on the intestines/bowels and causes the functioning to slow down considerably. Hopefully, she will begin to recover soon and the pain will subside.

During the day, she goes from one extreme to the other….from very happy and laughing and playing with everyone to crying with pain. The pain is not as frequent during the day, so we stay very active.

Her counts currently are: WBC = 160 (normal is 6-10,000), Hct = 23.8, and platelets = 73,000. Still no neutraphils.

Please remember our sweet little friend, Meredith Dyer www.caringbridge.org/visit/meredithgracedyer . She will be having scans, MRI’s, and other tests several days this week, beginning tomorrow. Pray that her treatment is doing even better than expected and that further surgery will not be necessary. Also, one of our newest friends, Addison Sewell www.caringbridge.org/visit/addisonsewell is up here on 4Tower for her LAST round of chemo!!!!! Congrats Addison!!!!! Also, McKenzie Bowman www.caringbridge.org/visit/mckenziebowman is in Minnesota for a bone marrow transplant. There are so many that need prayer and there are new patients all the time. Thank you to everyone for praying for Alaina and all of our friends as they fight cancer.

Believing in Complete Healing,
Jerri and Jeff

Monday, Sept. 17th
Alaina’s counts haven’t changed much yet. WBC = 110, which has increased minimally, but doesn’t have any neutraphils yet. Hct = 27 and platelets were low enough for a transfusion this morning at 10,000. Alaina was once again pre-medicated with Tylenol, Benadryl, and a steroid. She had no complications. This round had really hit her platelets. Usually, she requires 1-2 transfusions after a round, but this is her 4th one already.

She has had a really good day. She slept better last night than she has in a couple of nights and awoke saying she was hungry!!! This is the first day in months that she has eaten breakfast, lunch, and supper. Every meal was the same….chicken casserole, but at least it was 3 meals!!! And she also ate more casserole right before going to bed. You have to be wondering to yourself…just how much casserole do they take with them? She has already gone through what I brought initially, and I’ve had to call my mother to make some and send it to the hospital. Every one on the floor knows what Alaina likes to eat…Dr.’s, nurses, patients….everyone. She makes it very clear what she wants. I’m very thankful to my mother for preparing more and to Felicia for bringing it to the hospital. It would have been a VERY long day without chicken casserole!!!!

Alaina’s pain seems to be getting a little better. It’s very strange, but her roughest time every day is in the evening around 6-8 p.m. It is bad for 45mins. or so, then she is better. As of tomorrow, we are stopping the Senna (stool softener) to see how she does. We continue to give her Zantac and Dicyclomine for her stomach and Tylenol as needed for pain.

Alaina is really coming along developmentally. She is talking more, putting 4-5 words together, interacting better with others (today she was going down the hall waving and saying “Hi” to strangers), commenting on videos that she is watching, and noticing her surroundings without cues. And she is VERY independent….everything is “Alaina do it”. She tries to do more for herself right now than Alise does. This is so exciting to see that she is doing so well and is keeping up with Alise. Developmentally, they are about the same. When we recover from this round of chemo and things settle a little for us….It’s potty training time. I have really got to get on this area. This has just not been something I wanting to tackle in the midst of everything else, even though both of them have been showing great interest for a while now.

Now, for my little man……..Trent is growing up so quickly and we can tell a huge difference in his maturity since starting school. This round has gone so much better for him having school as something consistent. He misses home and all of us being together, but he is handling it so much better than previously. The other night I was talking to him on the phone and he said, “I wish we could all be back at home together. It’s so sad.” I explained that Alaina was getting better and that it wouldn’t be long. Our family has been split up so much. It will be a wonderful feeling to all of us to be together!!!!!

We were glad to see Tammy and Taylor Hendrix today. Taylor had scans and blood work today and received wonderful results. We praise the Lord for healing Taylor. She looks great and is so happy. We love you Taylor!!!!

Janna Hamilton has and MRI tomorrow. Please remember her. MRI’s and scans are scary times for all of us. Also, pray for their safe travel as they live in FL.

Please remember Andrew Long and his family. They are in the hospital, just a few doors down from us. I was able to speak to Ann and Bruce today. They are a precious family that needs prayer for strength, peace, and an abundance of God’s love at this time.

Remember that this month is CHILDHOOD CANCER AWARENESS MONTH. There will be another blood drive tomorrow, Sept. 18th at John Jones Elementary School, 1:30-6:30 p.m. To make an appointment you can go to www.givelife.org  

Realizing daily how blessed we are,
Jerri and Jeff


Sunday, Sept. 16th
Alaina and I have had a couple of rough nights, but it hasn’t all been bad. After waking up frequently through the night, and couple of doses of Tylenol, and several droppers of gas drops, around 4:30 a.m., Alaina sits up in bed and says, “I want to eat!!!” We got up and headed for the parents lounge, warmed a “man-sized” portion of chicken casserole, and you guessed it….She ate EVERY bite!!!! She was happy, played with all of the night shift nurses that she rarely sees…Rachel (a.k.a. “awful” ha!), Amber, Heather, Ashley, and Melodie.

She has been pleasant today and is taking a long, much needed nap right now. There still has been no improvement in her WBC/neutraphils, so there has been no mention of going home. She continues to receive antibiotics every 8 hrs., but the good news is that they only hook her up to the IV during the administration of the antibiotics, so it is much easier on Mama when we get out of the room.

While Alaina is doing very well for the most part, she is still having tummy problems. I asked today if we could start the Zantac again, as it seems to help last time, so we added this med. this afternoon. Please pray that this will help her. When she has pain, it can sometimes last up to 45-mins. to 1 hr.

There are several children up here with us right now that are having a very difficult time. Please say an extra prayer for them. We are now the “old” patients on the floor, so we have met some new families. Lily Porter is a precious little girl with a precious family. You could visit her site at www.caringbridge.org/visit/lilyporter  Also, remember Alyssa, Katrina, and Fred. I don’t know if they have sites or not, but when I find out, I’ll post them.

Taylor Hendrix has blood work and scans tomorrow. Please remember her. Also, pray for Andrew Long and his family at this time.

Thank you all!!!
Jerri and Jeff


Saturday, Sept. 15th
We had a very restless night last night, so we are ready for bed early. It’s 7:45 and Alaina and I are ready to hit the hay.

Alaina is doing well with her eating and drinking. She now weighs almost 29 lbs. She has gained almost 2 lbs. since we came into the hospital. They are now taking her IV away except for when she needs her antibiotics (every 8 hrs.). We are here only because she doesn’t have any neutraphils. Once she is producing some, they are considering letting us go home. We would then be educated on giving her the antibiotics at home for the next few days.

Thank you all for your continued prayers for our family.
Jerri and Jeff


Friday, Sept. 14th
Today has been a pretty good day so far. Alaina is acting okay…not her best, but her ALL of her counts are extremely low. WBC = 50, Hct = 20, platelets = 9,000. She is receiving a blood transfusion right now and the Benadryl finally kicked in, so she is resting well. The blood transfusion doesn’t worry me so much because she is receiving directed donor blood, but she also needs platelets, which unfortunately will not be ours. My specific prayer request is that she does well during these transfusions. After seeing her have a couple of reactions, it really makes me nervous. Our nurses are great and take wonderful care of Alaina during the transfusions, but they also take really good care of me. I’ve asked them to pre-medicate me with something, but they insist they can’t do that. Ha! They always give Alaina Benadryl and Tylenol prior to transfusions, but because of her reaction to the platelets Mon., they will also give her a steroid. Transfusions also include regular blood pressure checks until completed.

Okay, so now to try my best to explain the “infection” issue. When we arrived Tues., they cultured her blood. This culture grew a “gram negative” bacteria. From what I understand (which is very limited), there are 2 ways of classifying bacteria/infections…”gram negative” and “gram positive”. There are many infections that fall under these categories. The “gram positives” include such infections as staph and strep, but the “negatives” can include infections which can greatly effect the blood and potentially cause the patient to become septic. That is why they really get a jump on fevers. If not caught early enough the child becomes extremely sick and possibly unable to recover. I am very relieved to report that, although her first culture grew something, all of the cultures since then have NOT grown anything!!!!! They have taken her off of the Vancomyocin and now she is only receiving Fortaz. They still don’t have the specific type of “gram negative” infection identified yet, but they feel we should know soon. Once they identify it, they will determine what antibiotic would get the best response and d/c the Fortaz and begin that antibiotic. She will have to complete a total of 14 days of antibiotics….this is day 4.

About going home…..they said that we could administer the antibiotics at home, even if it has to be given IV, but in order to go home she has to be improving in the “WBC” area. Right now she has 0 neutraphils, which means that she has 0 ability to fight infection. Her ANC (absolute neurtraphil count) doesn’t have to be great…just moving in the right direction. Please pray that she can produce some in the next few days.

I feel that I need to apologize to some of you. Initially, I did pretty well returning phone calls, replying to emails, etc., but lately I’ve fallen short in this area….Please bear with me as Jeff and I are becoming extremely tired and find it difficult at times to do all that we need to do. Don’t think that we are unappreciative or that we are being inconsiderate. We love each of you very much and treasure the fact that you have all been close to us since Alaina was diagnosed.

Meredith Dyer is home!!! Carolyn Thompson is having some chemo related complications, but was able to continue with chemo as scheduled and should finish this phase of treatment by Oct.!!! Claire Devins is having trouble maintaining her counts at a satisfactory level. Bayleigh Phillips has been able to go to school some lately, which has been an excellent “mood” booster, as she has been able to be with more of her friends. Please pray for all of these, as well as remember the ones that have lost their children. Baby Hazel’s memorial is today. Her family needs strength to face the days ahead.

Thanking God for Answered Prayers,
Jerri and Jeff

Wednesday, Sept. 12th
as of today ALL of chemo is complete!!!! 

Jeff and I didn’t discuss who was going to update, so you all may receive an update from both of us. He is with Alaina tonight and I came home to cook some of Alaina’s favorites right now to take back to the hospital tomorrow. I’m sure most of you can guess what she is eating right now...meatloaf, creamed potatoes, and english peas. She even had it for breakfast this morning. Since that is about all that she will eat, I had to make enough to do us for several days.

Alaina is doing well. Jeff was with her all day today while I attended a continuing education course. I still have to attend these courses so I can maintain my OT license and since the course was only a couple of blocks from CH, I felt much better about going.

Alaina, Jeff, and I all slept very well last night. Alaina had a low grade fever during the night, but it soon subsided and she hasn’t had one since!!! She awoke this morning saying, “I want to eat!!” That is always music to our ears, but we also kind of panic sometimes wondering if we can get the food she asks for. This morning went very well. She asked for meatloaf, creamed potatoes, and english peas (I know, it doesn’t sound that good to me for breakfast either, but for some reason it did to her). I had enough for one more meal that I brought from home....Thank the Lord!!! SHE ATE EVERY BITE!!!

Her WBC is still extremely low, so we continue to give her the Leukine shots every night. Her platelets and RBC are okay right now. Her medications now consist of Diflucan, Bactrim, Senna, Dicyclomine, Zofran, and since admission, Fortaz and Vancomyocin (antibiotics). The only pain she seems to be experiencing now is when she sits, therefore she either stands, lies down, or sits on her knees.

Today was officially THE LAST OF HER CHEMO!!!! She received her Vincristine this afternoon around 4:30. I don’t think we have posted that while she was in the hospital for chemo, she began to grow eyelashes and a little hair. It also appears that some of the areas where she received radiation is beginning to grow hair. Her hair will be patchy for awhile, but that’s okay. We’ve gotten so used to seeing her sweet little bald head, that seeing hair will take some getting used to. I forget sometimes that she doesn’t have hair, until I see someone looking at her. Once she has hair, no one will be able to readily tell that she has had cancer.....That will be GREAT!!!!

It does appear that Alaina’s blood cultures are growing something, but right now they are uncertain what we are dealing with. Once they know what kind of infection she has, they may change her antibiotic to something different. We were all praying that she wouldn’t have an infection, but tonight we are praising God that she is happy, fever-free, eating and sleeping well, and that the infection was caught early enough that her symptoms didn’t worsen. We are also very thankful that this has been the only infection throughout her treatment!!!!

One more thing before I sign off. Alaina will be having her next scheduled MRI of her brain and spine on Oct.2nd. Please begin praying that we will receive “cancer-free” results.

Enjoying our baby as she is returning to the little girl we once knew!!!!
TO GOD BE THE GLORY.......GREAT THINGS HE HAS DONE!!!

Jerri and Jeff

Tuesday, September 11, 2007

Hi everyone from Children’s Hospital. That’s right we are back in because of a fever. Sometimes I wander if this will ever cease. Alaina was doing great after her last round of chemo, and last night she spiked a fever. A fever is such a small thing for most parents. You know a little Tylenol, Motrin, and just sweat it out. But for the parents of a chemo patient this is a very scary time. Your body usually gets a fever because it is working extra hard to rid itself of an infection of some kind. A chemo patient, until their immune system builds itself back up, does not have the ability to do that. Something as small as a fever can be fatal, if not treated immediately.

Early this morning we had to rearrange schedules and rush to the hospital. Along with getting things together for Alaina, we have two other children to shuffle around. Typically with a fever we are here for about a week. However, this fever has been different. Along with the fever she also had chills, nausea, and kept curling up in the fetal position. After drawing a blood sample, doses of Vancomyocin, Fortaz, and Benadryl, the doctor think she has a blood infection. These are the symptoms usually associated with this. We will have to wait on the blood cultures to be sure, but they seem to be confident this is what it is. Alaina also had a chest x-ray because of the congestion she has been having. We haven’t seen the results, but the doctor read the report and said everything is fine. If it is a blood infection, we will be here for 14 days.

This poses quite a challenge for Jerri and I. Trent is in school now and is committed to going M-F. With my new work schedule, this is going to be very difficult. God has made a way so far and I am confident He will see us through. Alaina is resting now, looks like Elmo has done it again. Elmo seems to be her favorite at the moment. I guess it could be worse. It could be the Wiggles, those guys “wigg” me out. Thanks for stopping in to check on us. We love you all, Jeff and Jerri.
 

Monday, Sept. 10th
Today turned out to be quite an eventful day. After taking Trent to school, we took Alaina to Rainbow Pediatric Clinic for blood work. I knew that her platelets were going to be low, but my jaw almost hit the floor when I saw...2,000 (normal is 150-450,000!!!!!). At this point, I called CH instead of waiting for them to call me, because I knew that it would be crucial for us to receive platelets...ASAP. What alot of people don’t realize (I didn’t prior to Nov. of last yr.), is that platelets are often times unavailable because of such a shortage. I called around 9:30 a.m., knowing that we would wait hours for platelets to be ready for Alaina. Although Jeff and I have tried desperately to donate all the blood products ourselves, we just didn’t time this right. It is difficult to predict sometimes and platelets only have 5 days after given before they expire. After making arrangements for Trent and Alise, Alaina and I headed for CH. (Thank you Gran for keeping Alise and Kelly/Will for helping with Trent)

We made it to CH around 2:00 p.m. and it wasn’t until 4:30 p.m that the platelets were there and ready. Alaina received Benadryl (as always) prior to the transfusion...did fine during the 15-20 mins. it took to get them... and as she was finishing up her face became very flushed/red, she began coughing/gagging, vomited some, and had some rashy places on her stomach, arms, and legs. The nurses were great and had a Dr. in there to observe her within minutes. They gave her a shot of steroids, additional Benadryl, began the paperwork necessary for a transfusion reaction, drew labs, and took vitals regularly. Alaina slept mostly during this time, but after about an hour the redness had lessened and we were able to head home. After all the Benadryl she received, she slept going home as well.

Once home, we gave her a bath, changed her dressings on her central line, fed her some chicken casserole and she is now sleeping very well. Grandmaw (Jeff’s mother) came a got Trent to spend the night with her so she could take him to school in the morning and the girls and I can sleep in!!!! Thank you Grandmaw!!!

It never fails that when something major happens with Alaina...I’m alone with her. That has happened several times in the course of her treatment, but the Lord puts just the right medical staff around us at just the right time. Today, by the time Alaina’s face was looking red, the nurse was calling for the Dr. I am very thankful for the competent staff in Clinic 8...They are on top of things!!! I have learned a few things after going through some of these rough times with Alaina....Sometimes God wants us to depend only on Him for our source of strength. Many times we have the tendency to call on a friend or a pastor or someone else whom we feel can be our strong arm to lean on. Even when alone, it is comforting to know that God has been there with us the entire time....Thank you Lord for teaching me to “Lean on the Everlasting Arms”.

So, our next visit to clinic will be Wed. of this week. Jeff will be taking Alaina, as I have a continuing education course to attend. Alaina will receive more Vincristine and THAT SHOULD DO IT!!!!! Of course, they will draw labs again to check her counts, so please pray that she can hold on to those platelets.

I really hated that I didn’t get to go by the blood drive tonight at Top ‘O The River, but my parents and Jeff, Trent, and Alise were able to go by and said there was an excellent response. For additional info. you can go to Bayleigh Phillips site (on our friends links). Johnny (Bayleigh’s dad) was responsible for heading up this drive and Dixie (Bayleigh’s mother) is excellent in updating. I really don’t know how she does all that she does!!!

There will be another blood drive which my dad is helping to organize. It will be held at John Jones Elementary School on Tues., Sept. 18th from 1:30 - 6:30 p.m. You can visit www.givelife.org to make an appointment.

Thank you to everyone that participates in giving blood. Having a child who has had cancer and requires several transfusions following each round of chemo, makes me appreciate those who so willingly give of their time in order to save lives!!!! You know, I think about this time last year, I knew nothing about childhood cancer and really don’t remember hearing anything about September being Childhood Cancer Awareness Month. It’s amazing how your life and the things that are of importance to you can change overnight. On Nov. 9th, we had no idea that the very next day we would be changed by cancer FOREVER! The following sites are for other children in Etowah County that are or have been fighting cancer. Please visit them. Their strength is amazing!!

www.caringbridge.org/visit/bayleighphillips
www.caringbridge.org/visit/emilyjohns
www.caringbridge.org/visit/austinelliott
www.caringbridge.org/visit/alexkirby 
www.caringbridge.org/visit/sarahclayton
www.caringbridge.org/visit/tylercoleman
www.caringbridge.org/visit/parkerobarr

Saturday, Sept. 8th
September is Childhood Cancer Awareness Month. There are several events and blood drives this month here in Gadsden. The first is going to be a blood drive, Monday, Sept. 10th at Top ‘O The River from 3 p.m to 8 p.m. If you can participate, It would greatly help, as there is such a shortage of blood and blood products. If it would be easier for you to make an appointment, you can go to www.givelife.org I will be posting other drives and events.

Alaina is doing well this weekend and seems to have plenty of energy. God is so good and continues to pour His love and mercy on our family. Please remember some of our friends...Meredith Dyer, as she is at CH receiving antibiotics for an infection either in or around her central line. Pray that it is only a skin infection. This would be an easier problem to correct. Also, Carolyn Thompson, as she is finished with her steroids and hopefully will be ready to continue as planned next week. Janna Hamilton, as she will be having an MRI her next clinic visit (about 2 wks. away). Keaston Bell, as they are looking to go to New York for a very promising treatment. Bayleigh Phillips, that she will continue to feel as good as she has been and that her treatment can continue as scheduled without any set backs.

We also have several friends that have completed treatment and doing very well. Pray for continued good days for Summer Thompson, Taylor Hendrix, and Parker O’barr, Owen Lyons. There are so many more that need prayer. I will update everyone on others as I have more specific requests/progress.

Please remember the families of Kennis, Ryan, Rayley, Chance, Hazel, Cory, Cody, and Josh. It is hard to imagine the pain and heartache these families experience after losing their children.

We love you all and will be updating soon...I promise.

Jerri and Jeff


Friday, Sept. 7th
Well, I guess you all figured out that we went home Mon. I really try hard to continue to update once home, but there is so much to do and I’m so tired by the end of the day. We do appreciate you all keeping up with us and I’ll try to do better.

Alaina is doing much better than usual following her chemo treatment. We had to return to clinic Wed. for a follow-up post discharge, another shot of Vincristine, bloodwork, etc. Alise went with Alaina and me this visit and I must say that it was a good day. Alaina really enjoys having Alise with her and they both behaved very well. They fell asleep at regular nap time and enjoyed watching several Elmo DVD’s and Milo and Otis during our long wait for platelets. Alaina also receive fluids during our wait. I enjoyed spending time with just my girls. It’s not very often that we have that opportunity. Alise fell asleep in my arms and I couldn’t tell you the last time that happened.

Alaina’s counts were dropping on Wed., with WBC = 1800’s, Hct = 35, platelets = 22,000. Today at the Rainbow Pediatric Clinic they were even lower, WBC = 300, Hct. = 33, and platelets = 24,000. We were really surprised by the low platelet count since she just received some Wed. The plan is to watch her over the weekend for any bruising or bleeding and return to Rainbow Pediatric Clinic Mon. for counts again. We aren’t scheduled to return to CH until Wed. unless we spike a fever or have other complications.

Alaina isn’t eating as well as she was, but she is still eating something every day, which we consider a blessing. She has been enjoying raisins, dried cranberries and cherries, and tonight ate better than Trent and Alise. We had the meal that has been her favorite “post chemo” meal for a while now....meatloaf, creamed potatoes, and english peas. When we went to clinic Wed., she weighed 27 lbs., which is only 2 lbs. less than what she weighed at the beginning of this round!!!!

She still cries some with BM’s, but this has been much improved since we began the Dicyclomine for abdominal spasms. We have also continued to give her a stool softener once daily.

Trent going to school has been such a wonderful change for him, but has been very challenging for me to get all the kids up and have him there on time. We have made it every morning on time (so far). He is so happy and the consistency is something he really needs in his life right now. Mrs. Nora is wonderful and it’s great to know that we are leaving him with someone who is teaching him so well....Thank you Mrs. Nora for coming into Trent’s life at just the right time!!!!

Alise and Alaina and I have enjoyed lots of “girl” time this week. We were trying to get some fun in before her counts took a dive. After taking Trent to school, we went to the park, where I saw a little of the daredevil in Alaina that we used to see. She was climbing and sliding and swinging and walking and just having a ball. She fatigued a little sooner than Alise, but not much. The girls have talked and jabbered and laughed more together this week than we’ve seen. IT’S BEEN WONDERFUL!!!! We also went to the boat dock and walked on the pier to enjoy the water. They both love water, but especially Alaina. Every time we cross the Southside bridge, Alaina comments on the water. We also went to see the water fountains beside Chili’s. They wouldn’t go near them.

Trent got to hold his first really big frog yesterday at Papa and Gran’s house. He thought that was the greatest thing ever, but once the frog’s hopping became more labored, we told him it was time to set him free. I guess we have come to the point where I need to be sure and check his pockets often.

We don’t have a date set for Alaina’s next MRI’s, but they will be sometime the end of this month. Please begin praying now for wonderful results.

We love a appreciate all of you very much.

Jeff and Jerri

Sunday, Sept. 2nd
Well, it’s 10:15 p.m. and in about 2-2 ½ hrs. Alaina will be finished with her Cisplatin. She is asleep right now, and has been since a little before 8:00 p.m. She will receive fluids over night and then we should be discharged tomorrow!!!!

Before beginning this round, I prayed that this round would be even better than last round in that she would eat well and feel good. The Lord has answered this prayer over and beyond what I ever expected!!! Our God is so good and so merciful and blesses us beyond our imagination. Tonight, as I lay my head down, I am praising God for seeing Alaina through the very intense treatment she has had. Watching her this past week has been so exciting and refreshing, and I feel that the Lord has restored my hope. Several nurses have commented about how happy she has been this entire admission. She is so full of life…playful…silly....PRAISE GOD!!!! There have been many times I didn’t think we would ever have Alaina back (not the Alaina we once knew), but I’m here to tell you that….She is back!!!!

I know that some rough days are still ahead, as her counts decline, but through this I have learned to praise God and be thankful for what I have at the moment. No matter how difficult our circumstances, we can always find many reasons to be thankful.

We are thankful to all of you who have been with us though this journey and have lifted our little girl to the Lord in prayer. God has heard those prayers and we have felt the power of those prayers for over 9 months now. Some of you we know well….some are new friends that we have come to know….and some we have yet to meet. You are all very much apart of us and we thank you for your faithfulness to our family.

Thankful to God,

Jerri and Jeff

Saturday, Sept. 1st
Sorry I didn’t get to update last night, but about the time that I usually get a few minutes to let you all know how the day went, Alaina was requiring a lot of attention. Last night around 10:00 p.m., she began crying with what seemed to be the same pain as before. After several crying spells and a couple of dirty diapers, she slept. She awoke periodically crying and restless, but soon returned to sleeping. This morning she has had some of the same episodes, but right now is sleeping very well.

I told you all of the bad news first this time. Other than the occasional discomfort, SHE IS FANTASTIC!!!! She did clear the Methotrexate and was able to continue with chemo yesterday. She received Etoposide (2:30 p.m.-6:30 p.m.) and then Cytoxin (6:30 p.m.-7:30 p.m). Of course during the Etoposide, we had to remain in the room, so by 6:30, she was ready to hit the halls. She was riding on the new “Dora” ride from 4 Tower…(IT HAS MUSIC!!!), riding in the wagon, and walking…walking….walking! She is such a little socialite this time. She has enjoyed playing, teasing, laughing, and loving on everyone. It has been amazing to watch the transformation that has taken place. It has taken 9 ½ months, but they all finally won her over. Everyone is great with her. They will never truly know how much we appreciate all the wonderful care Alaina has received. We are so glad to complete our chemo, but we will miss all of the staff on 4 Tower and 4 West. They have truly become our friends….WE LOVE YOU ALL VERY MUCH!!!

After playing with everyone and getting some exercise, we returned to the room for some blood. They started the transfusion around 11:00 p.m., so we finished up around 3:00 a.m. (You would have never known that her Hct was low…she was so full of energy!!)

Today’s chemo will be the same as yesterday and then tomorrow (OUR LAST DAY) she will receive Etoposide and Cisplatin. This is always a long day of chemo….Etoposide (4 hrs.) and Cisplatin (6 hrs.). This will be all the “BIG” chemo drugs!!!!! We will be discharged Monday and then return to clinic on Wednesday for a shot of Vincristine and then the following Wednesday for another dose of Vincristine…then chemo is OVER!!!!!! Wow, OVER…that sounds so good!!!!

We really would like for everyone to pray that Alaina doesn’t experience the pain that she has previously. Also, pray that we can go without fever. Going without fever rarely happens, but we have all seen how prayer can change things. Also, please pray for our friend, Janna, she will be having scans in a couple of weeks.

Only 2 more days, then we will be HOME!!!!

Jerri

Thursday, Aug. 30th
Well, Jeff and I have made the swap. This afternoon Trent, Alise, and I returned to the hospital. I am now here with Alaina and Jeff is Mr. Mom at home. I enjoyed being with Trent and Alise so much, but I have to admit, there was a part of me that was lost without being with Alaina. This was the first time that I’ve left her overnight since Nov. 9, 2006. It was extremely difficult, but I knew that she was in good hands with her daddy, and I could spend time with Trent and Alise. One of the hardest things for Jeff and me has been balancing the kids so we each spend quality time with them and so we feel that we are being the parents that each child needs. Being a family that is fighting cancer, there are a flood of emotions that present themselves, and the children are not excluded. Who knows exactly what emotions they are experiencing….perhaps separation anxiety, sadness, worry, fear, or even anger. Jeff and I are so tired and exhausted and many times it is hard to accomplish all of the “must do’s” during the day, not to mention the extras that a child needs, such as reading an extra book or two, or playing like a super hero, or having a tea party. The kids have been great and very patient during the past months, but there are times that we can tell that they are exhausted too. We are all anticipating the day that we can look back on the past 9 ½ - 10 months, as we are familiarizing ourselves with what “normal” feels like.

Alaina is eating fairly well…..an entire McDonald’s cheeseburger last night and bacon, toast, and milk today. If you all remember, the 3rd round was the kicker last time. After that round, her eating totally diminished and we had a feeding tube. Please pray that we will not have to go that route this time.

She is very active and energetic, so you know what that means…..we are in the halls ALOT!!! In our “hall adventures” we go by the very first room we were placed when they began unraveling this devastating diagnosis and telling us about this horrible beast that had invaded our beautiful 25 month old baby girls’ head. As we pass the door of room 415, I can still recall the sickening feeling I had when Dr. Sachivi told us the only chance of survival was for Alaina to go through a very lengthy and risky brain surgery. Even with the surgery, he almost guaranteed that she would experience some life changing deficits, and couldn’t tell us that this surgery would render her tumor-free. We had to make very rapid decisions about the course of treatment Alaina would face. How could this be happening? She looked healthy. She was happy. And she had not ceased to keep up with Alise in every aspect. Yet, she was facing brain surgery.

Here we are…. many months have passed, and Alaina has no major visible deficits, she is tumor-free, happy, and in every sense of the word…..A MIRACLE!! It’s funny; tonight I was thinking…..When do we start claiming Alaina’s life as a miracle? The answer that I received was….”Right Now!!!” Alaina is CANCER-FREE….RIGHT NOW. I choose to claim her healing now. I don’t know what the future holds for her, but as of today…. she is healed of cancer. We don’t know what’s around the corner for any of us, but God does, and I know whatever is ahead, He is paving the way. I THANK MY LORD AND SAVIOR FOR HEALING MY BABY!!!!!

As I thank God for Alaina’s healing, I am immediately reminded of a precious family mourning the loss of their little girl. Hazel Anderson lost her battle against AT/RT here on earth, but right now she is cancer-free as she is with her creator who loves her more than we can ever imagine. Please remember this family as they find a way to continue without her. Her website is on our links.

Please remember Meredith Dyer as she is also here receiving more chemo. Andrew Long’s family also needs prayer as Andrew has had some difficult days.

Thank you all for your continued prayers for us, as well as our friends. We love you all!!!

Celebrating a Miracle Today, No Matter What Tomorrow Holds,

Jerri and Jeff

Wednesday, August 29, 2007

Hi everyone, this is just a little update to let you know how we are doing. I have taken the week off to be with the family for Alaina’s last round of chemo. This part of our nightmare is almost over! Although there will always be the lingering thought of the disease returning, we are thrilled to be here in this place. Almost done with treatment. It is a very difficult thing to face what life hands you, and without the support of The Creator of the Universe, family, and friends like you it is near impossible.

Today has been a very good day, just like yesterday. Alaina came in on Monday to begin treatment. Not much happened on Monday but the fireworks started on Tuesday. She has been a little ham with the staff and with her brother and sister. The nurses have all agreed that she is in rare form. It is almost like she knows it is her last round! She has played with the nurses, calling them by name and then hiding from them. Also, picking little arguments like saying something is green when it is really blue. She has really won these girls over up here. Amid all of the fun, I can’t help but remember why she is here. Last round of scheduled chemo. I am sure we will be back up here at some point, but for now this is a milestone I will gladly leave behind.

Alaina went down for a hearing test earlier today, and passed within normal levels! The audiologist is very pleased with her level of hearing. The only thing that seems to be lower than normal is at the high end frequencies. Her ability to here those tapers off in the low volume test. But, we are still very pleased with her maintaining her hearing and this is proof that the Lord still hears the prayers of His people. A chemo patient usually looses more of their hearing than Alaina has. So thank you Lord for letting her keep her hearing!

Also, we have had many pain free “poopies”. No crying or doubling over in pain in several days. Some of you may not want that kind of dirty talk on your screen, but we have to tell all of the good! It may not seem like much to some, but this is a real breakthrough in our lives.

I am staying with her tonight to give Jerri a break, and to spend some time with the other 2 kids. Both are doing great (by the way). Trent is in school now and is really growing up. He is starting to feel responsible for his actions. Not just because of the spankings, but you can tell he is really starting to understand when he has done wrong. Alise is the same no matter what or where she is. I love my family very much, and I may never know why this has happened. But what I do know is that I will never take them for granted. I am blessed beyond measure and I look foreword to having them all back together. Thanks for everything,

Jeff and Jerri.
 

Thursday, Aug. 23rd
It is a go for Monday. Alaina’s counts are really good...WBC = 3700, Hct = 29, Platelets = 172,000. SHE HAS GAINED 2 lbs.!!!! She weighs 29 lbs. and Alise weighs 32 lbs.....only 3 lbs. difference!!!! We are so thrilled!!! Alise is about 1 1/2 - 2 inches taller than Alaina right now, but maybe Alaina will hit a growth spurt after chemo. God is so good and has brought her so far.

Alaina seems to be feeling much better. She is still having some discomfort, but the episodes don’t last near as long. After talking with Allison, we have started Alaina on Dicyclomine, which is for abdominal spasms. She has been taking this since Tues. night. We also have her on a schedule of a half dose of Miralax (laxative) every other day and Senna (stool softener) 2x/day. Thank you all for praying about this problem she is having. As I mentioned before, she is doing great in every other area!!!!

Alise is doing very well. Her head is healing nicely and she is as happy as ever. Believe it or not, the past couple of days she has been a “Mama’s Girl!!” This has been good for me to be able to cuddle with her and get voluntary kisses. Most of the time cuddles and kisses are directed to Daddy.

Now for Trent....he has had a very rough day. He had a stuffy nose yesterday, so I began giving him some cold medicine, but this morning he awoke with a fever, complaining of a headache, and feeling nauseated. I took him to Rainbow Pediatrics, where we saw their newest doctor...Dr. Dan Lockridge. I’ve known Dan and his family for years and was very glad that he was there. He was wonderful with Trent and I could tell that Trent felt very comfortable with him. Trent even said, “I want to go back to see the Dr. It was fun.” Wow...how often do you hear a child say that!!! Anyway, he determined that Trent has a sinus infection, so he prescribed an antibiotic, decongestant, and Tylenol (as needed). Although Trent hasn’t felt well, he has been such a good boy today. Trent and I have watched “Cars”, “The Incredibles”, “Mickey Mouse Clubhouse”, and “Meteor and the Mighty Monster Trucks.” We have both enjoyed having a little one-on-one time today since Gran and Papa came and got the girls. Alise and Alaina are spending the night with them tonight. (This is Alaina’s first time to spend the night away from us in 9 months) Dr. Lockridge said that as long as Trent was running a fever we should try to keep the kids apart....especially Alaina since she will be starting chemo in a few days. Please pray that the sickness doesn’t go any further.

Jeff is now off work for the next 12 days!! This will be great for all of us this round. Please join us in praying that this round will go extremely well....that she won’t be sick, she will continue to eat, and will recover quickly. I know these requests are big, but our God is bigger and He brought her through the last one and she even gained weight!!!!

Looking Forward to the END of chemo!!!!

Jeff and Jerri

Monday, Aug. 20th
Well, today was my first day to get all 3 kids up and moving and Trent to school by myself. I guess I was so afraid that we would be late, that we were actually a few minutes early. Trent is absolutely loving school, looks forward to it every morning, and shows excitement about the activities they have planned. It is a good change for him and a much needed one!!!! Thanks again First Baptist Gadsden for the ministry you have provided to our family. We love and appreciate your giving spirit and we are enjoying meeting those of you who have followed our journey even before we actually met.

I planned to take the girls to Cracker Barrel for breakfast after we took Trent to school, but they got up around 7:00 a.m. and I knew that it would be close to 9:00 a.m. before we could eat, so I gave them some cereal. Alaina ate 2-3 times more than Alise and actually wanted more, but I stopped her so she would eat well at Cracker Barrel....and boy did she!!! She had 3 strips of bacon, 3 eggs, almost 1/2 of a pancake and milk!!! I know you are all thinking that she must be taking an appetite stimulate....she is NOT!!!! We are all just seeing alot of prayers being answered in this area!!!

I know it seems I discuss her eating all the time, but this has been such a concern. I just have to share this with you all. Tonight, Marie brought dinner from Logan’s. I really didn’t think Alaina would eat much if anything, but SHE DID.....Salad!!!....Grilled Chicken!!!...Baked Potato!!!...and of course, no one can pass up their Rolls and Butter!!!! I have mentioned before how our wonderful church family has been providing meals for us for WEEKS now, and I can’t tell them all how very much we love and appreciate them taking this stressor from us. I really believe that is why Alaina is eating so much better this round....because she sees so much of a variety of food...and of course, Jeff, Trent, Alise, and I are digging in too!!! WE LOVE YOU ALL SO MUCH!!!!

We went to Rainbow Ped. Clinic this morning and we were shocked to see that her WBC had dropped significantly since last week. It was 2700 today and was 6900 when last checked. Platelets were better at 138,000 (was 68,000) and Hct had dropped from 33 to 29. I talked with Allison (our nurse practitioner) about our desire to start next Monday. She said that was probably a good idea anyway just to make sure her counts are not going to drop any more. So, if all goes as planned, we will be admitted on Monday and chemo will begin on Tuesday. We are to return to Rainbow Ped. Clinic Thursday for counts again. Please pray that her counts start going up in the next few days. I have to admit that my heart skipped a few beats as I reflected on all the places we have taken her over the past several days. We had no idea that they had dropped so much.

Yesterday at church, Alaina went with me to take Alise into her class. Alaina walked right in and began playing as if the past 9 months had never occurred!!! Jeff and I intended on Alaina sitting with us in the balcony, but she did not want to go with us. Just because of all she has been through, her central line, her pain at unexpected times, we would have never left her, but our precious class workers encouraged us to leave her and that she would be fine. Jeff and I both sang in the choir, enjoyed the sermon, and believe it or not, I didn’t even go an check on her (I admit I wanted to but I knew she was in good hands). IT FELT SO NORMAL!!!!

I would like to ask you all specifically to pray that her discomfort ends soon. This is actually the only problem she is having currently. Everything else is going so well. We just never know when it is going to hit her. Pray that we are led in the right direction to get her problem under control.

In closing, I would ask you all to pray for our friend, Claire Devins, who will be having scans the end of this week. This is her first scan since completion of treatment. Also, Andrew Long and his precious family. They have had to make some very difficult decisions lately. Owen Lyons (one of our AT/RT heroes) is still having some seizures and will be starting a new medication. Carolyn Thompson, as she is undergoing a very tough chemo regimen at this time and needs strength. All of these are on our favorites, as well as many of our other friends who also need prayer.

As always, we are so blessed to have so many caring people around us. It brings to mind the song....”Count your many blessings, name them one by one, and it will surprise you what the Lord has done.” We are truly receiving blessings from above....from God...through His people...our brothers and sisters in Christ!!!!! Thank you from the depths of our hearts!!!

Praising God for His Goodness!!!!
Jeff and Jerri

Sunday, Aug. 19th
I’m sorry for the delay in updating. Jeff was off work Wed., Thurs., and Fri., so the 5 of us enjoyed some much needed family time. It has been really good and seemingly “NORMAL” except for a few issues that Alaina is having. I really hated to see Jeff go back to work. The few days that we all had together makes me miss him even more when he isn’t with us. I don’t say enough about what a wonderful husband and daddy he is. During all of this, Jeff has kept our family very stable. He is very supportive of me and what I’m feeling a the moment (and believe me...it changes moment by moment sometimes), and shows all 3 of our children love, compassion, and consistency. We all love him very much and are blessed that he belongs to us!!!!

So, since last Monday (my last update), we were able to stop the Leukine shots Wed. (15th) and she completed her antibiotics for the C-diff (infection) on Thurs.. We had her counts taken on Wed. and they were looking much better. WBC = 6900, Hct = 33, and platelets = 68,000. I think when I last updated I thought we were going to return to B’ham for a Dr.’s visit on Wed., but they changed that and said we could stay home and just go to Rainbow Ped. for blood work. Of course, we didn’t argue!!! They said that if all still looked well, we would plan to begin the next (oh, I’m sorry, LAST) round this Wed. We are going to talk with them about possibly waiting until Mon. (tomorrow) week....Aug. 27th. Jeff is planning to take off work a week and if it begins Mon., he will end up being off 12 days counting his scheduled off days. I’ll let everyone know once we have discussed this with Dr. Reddy.

Alaina continues to have problems with her bowels. She will be okay for a few days then problems return. We just haven’t found the right schedule of Miralax and Senna (stool softener), but I can say that it is better.

She has a wonderful appetite and is trying many of her old favorites...PB&J sandwiches, green beans, mandarin oranges, and much more. It has been easier to find something she will eat when we go out to eat. She is usually ready to eat before Alise and Trent. I thank the Lord for her good healthy eating this last round!!!!

We have once again been blessed unexpectedly. Jeff and I had wanted to enroll Trent in a K4 class this year, but with all that has been going on, we never did. We thought, well we will just start him next year. The Lord had other plans. We received a phone call last week from First Baptist Church Gadsden, saying that they had an opening in “Mrs. Nora’s” class. (Mrs. Nora is the mother of one of our good friends!!!) They wanted to offer Trent the opportunity to attend...free of charge!!!! We are extremely grateful to Mrs. Nora and the First Baptist Church Gadsden for helping our family in this area......Everyone has been so precious to us and Trent loves school after only 2 days!!!!

Amazed at God’s Blessings!!!

Jerri and Jeff

Monday, Aug. 13th
Alaina’s counts are looking really good!!!! WBC = 4900!!!!!, Hct = 34, Platelets = 65,000. I just talked with Allison and she said to continue the Leukine shots until Wed. at least. We are to go to Rainbow Pediatrics on Wed. for blood work. She feels we will probably be able to stop the shots then!!! We don’t return to B’ham until Wed. week, at which time, we will more than likely be ready to begin OUR LAST ROUND!!!!

We will be out and about the next week or so, enjoying our free time and good counts while we can. Jeff’s off days are Wed., Thurs, and Fri. of this week, so we may even go somewhere overnight.

I would like to leave you with something my daddy wrote a few days ago. It speaks volumes about how we should come to God as little children!!!

MY SHORTEST PRAYER
My name is Ray Drummonds and I am married to Rachel Coker Drummonds, we have been married for 42 years. We have one daughter, Jerri and she is married to Jeff Atkins. They have three children; Trent, 4 and Alise and Alaina, twins, 2 1/2.

As I lie here getting ready to go to sleep, I am running the last week over in my mind and having trouble resting. As a grandfather, I hurt not only for my grandchildren, but for my children, too.

You see, nine months ago, Alaina was diagnosed with a malignant AT/RT brain tumor and this week has been rough on all of us. One day in particular stands out to me and that is Friday. Jerri had gone to give platelets for Alaina, Rachel and I were staying with Alaina while Jerri was gone. They had taken a CT scan of Alaina’s stomach because of the discomfort she was having and we were waiting on the results. The Dr. came in and told us everything looked good with Alaina’s stomach, but they were concerned with something they saw on her hips and wanted to take another picture to look at it closer.

Rachel and I went with Alaina to get her x-ray, and when we laid her on the table, the lady asked if we needed to hold her down. I told her I didn’t believe it would be necessary, and I asked Alaina to lay still. As she laid on the table, she relaxed, took a deep breath, bit her quivering bottom lip, and looked up at Rachel and said
HAND.

We both understood she wanted us to hold her hand. Rachel told her not to be afraid it wasn’t going to hurt and we would not leave her for one second. As we took her hand, I realized what faith she had in us that it would be O.K. The x-ray showed some holes in her hip bones where she had bone marrow harvested and was not anything to be concerned about.

So, tonight, as I go to sleep, I am looking up, taking a deep breath, biting my lip, and raising my hand and saying
HAND.

I am sure He understands too.

It’s not the size of the mountain, but the strength of the Mountain Mover.
Jeremiah 32:27

Friday, Aug. 10th
Hello to everyone!!! I really didn’t mean to wait 4 days before updating, but time flies at home. So, we were discharged Monday as planned. Right before we left to come home, they broke the news to us that Alaina had tested positive for C-diff (an infection that often comes when increased antibiotics have been administered). So, how is it treated.....another antibiotic (Flagyl). She has to be given this antibiotic 4x/day for 10 days. At this time, she is also taking Bactrim (antibiotic) 2x/day, 3 days/wk, Diflucan (anti-fungal) 1x/day, and the Leukine shots every night (to bring up WBC). All other meds are on an “as needed” basis. We are thankful that she really isn’t having to take very many meds at this time.

We’ve had counts drawn on Wed. and then again today....WBC = 1100 (Wed.), 1800 (today), platelets = 137,000 (Wed.), 80,000 (today), Hct = 33.2 (Wed.), 34.4 (today). Her platelets seem to be coming down, so I’ve arranged to give platelets tomorrow in B’ham. I can’t say enough how much we appreciate the Gad. Ped. Clinic making this time so much easier for us. They are always so quick to get Alaina in and out of the clinic and let us come around lunchtime when it is less crowded. Also, a BIG thank you to my Dr.’s office (Dr. Robinson) who let me come when needed to get my Hct checked. We have been blessed by wonderful people all around us during this time. I don’t think that I’ve mentioned our wonderful case manager (Angie), who keeps up with us daily and has been right there to answer any insurance questions, as well as just calls to tell me that she is still there to help in any way...Thank you Angie!!!! The Lord is good and we thank Him for allowing this people in our life.

Alaina’s appetite is GREAT!!! This is such an answer to prayer. The last couple of days has felt so NORMAL as far as mealtime goes. I have been able to get everyone to eat the same things. One of the greatest challenges during all of this is that I have been having to fix Alaina several different things in an attempt to get her to eat. She is really trying alot of things now.....oatmeal, biscuits, eggs, pancakes, blueberries, strawberries, applesauce, carrots, green beans, corn, grilled chicken, fried apples (just to name a few)!!!! We have been amazed at the wonderful meals our church family has been providing for us. It is FANTASTIC!!! Thank you all so very much!!!

I had all three kids at the clinic today, so we weighed them....Trent is so proud and will tell you quickly that he weighs 42 lbs!!! Alise weighs 32 lbs. and Alaina weighs almost 27 lbs.

Alaina continues to have some “bottom” pain, but this is MUCH better!!! The last couple of nights she has slept ALL NIGHT and hasn’t gotten up until Alise....around 8:30 - 9:00 a.m. That’s the way it used to be. It feels so good!!! When she wakes up she’s ready to eat and often times she has eaten more than Alise and Trent.

Well, Alise and I got to spend some quality time together tonight in the E.R. Trent threw a toy and Alise’s head happened to be in the way. Of course, all the blood made it look alot worse than it was...nothing a little “super glue” couldn’t fix. While Alise, Gran, and I waited....Alise was perfect and very happy. In fact, she was acting so silly and giggling so loudly, that she brought smiles to alot of faces. That’s my girl...happy no matter what!! We were happy to walk into the E.R. and see Dr. Linda Jones (a long time friend). She was excellent with Alise...Once again the Lord provided just who we needed, at just the right time!!! We were in and out in less than 2 hrs.!!!!!

I have to admit to you that the past week or so, I’ve really had to fight Satan off. I can’t really put a finger on it, but he has tried extremely hard to still my joy. Of course, he seems to hit when I’m the most vulnerable. I’ve had little sleep, I’m emotionally drained, and I have times that it hits me hard that my baby is fighting...CANCER. I hate what it is doing to her little body. As I look at her bald head, very few eyelashes, her small frail body (compared to Alise), the central line in her chest, her discolored teeth, and the incision on her head...my heart is saddened. This is far from where I thought our family would be 9 months ago. The part of this that is extremely difficult is that, as I look back at pictures before her diagnosis, I try desperately to remember her during that phase in her life and it’s hard. Jeff and I both have talked about how hard it is to remember the “old Alaina”. I wonder to myself...what would she be like had she not had to go through this? Would she be more outgoing, less clingy, more adventurous? I do remember that she was always happy and always smiling....I look forward to those days again. All of that said....ENJOY LIFE TO THE FULLEST!!! We never know when things will change.

We received good news about one of our little ATRT friends, Mattea. She received CLEAR scans a couple of days ago!!!

Embracing Life,
Jerri and Jeff


Monday, Aug. 6th
WE HAVE NEUTRAPHILS!!!!! Alaina’s total WBC remains relatively the same, but the good news is that we have more of what we need to fight infection. Her Hct (22.6) and platelets (19,000) are low, so she will have transfusions today. She will receive my platelets, but RBC will have to be from another donor this time. After she is transfused….WE ARE GOING HOME!!!!

Last night was a little better compared to the previous couple of nights, but we were still up a couple of times. She is going longer between doses of Benadryl and Atarax, so that is a good sign. Around 8:00 this morning we were doing an oatmeal bath again, which really does seem to help her. After that, she received Atarax and Tylenol and ate a wonderful breakfast…eggs, bacon, biscuit (with strawberry jelly, of course), applesauce, fresh strawberries, and milk!!!! Now that makes a Mama happy!!!!! She is now taking a much needed nap.

Our nurse (Kasey) just came in to start the blood products. It is about 12:00 p.m. now, so we should be ready to head to the house around 5:00 p.m. or so!!!! The kids are going swimming with Felicia so Jeff can come to the hospital to help us load up….Thank you so much Felicia!!

Well, I guess that is all the news I have so far. We are to return to Gadsden Pediatric Clinic on Wed. to have counts checked again and aren’t scheduled to return to clinic until next Wed. Pray that we are able to stay home without any complications.

You all know how lousy I am at updating once we are home, so bare with me for a few days while I love on my family a little.

Southside Bound!!!

Jerri

Sunday, Aug. 5th
Well, the past few nights have given us a chance to get to know the night shift a lot better. Last night we were up quiet a bit again, alternating Benadryl/Atarax. All of our nurses are just GREAT!!!! It would really be much worse being here for over a week, 4 of which have been spent in isolation, if the nurses weren’t so wonderful to us. They have become our family away from home!!! Thank you to all of them for helping me maintain my sanity!!!

Alaina had a good day today and her “itching” and pain has seemed to decrease. Today the Dr. ordered an oatmeal bath, which really seemed to help her. She took a good 2-2 ½ hr. nap after the bath and a shot of Benadryl.

She is eating McDonald’s cheeseburgers like they are going out of style!!!! So, we are very thankful for a good appetite at this point!!!

Jeff, Trent, and Alise came to the hospital today after church. They were here around 3 p.m. and didn’t leave until after 9 p.m. We had a great time and one of our nurses commented on how different Alaina was acting with them here. Alise and Trent were so sweet with her. At one point, all 3 of them were on the little pull-out bed that I sleep on and Alise and Alaina were laughing and giggling and playing “footsies”. Trent was lying on the bed and Alaina wanted to lie down beside him. That thrilled Trent…and he even shared his action-figure with her. It was wonderful watching the kids play and enjoy each other. I think Alise has grown over the past week….and wow, how she is talking!!! I miss them so much, but I just keep telling myself that we are doing what needs to be done to have us all back together and healthy again.

Tomorrow we will need platelets and then we should be coming home!!!! This week has been one of our more challenging weeks, but we thank our gracious Heavenly Father for bringing us through. Thank you all for your prayers, calls, and emails. It really helps to have such thoughtful and caring friends around us.

Anticipating Sleeping In My Own Bed Tomorrow!!!!

Jerri

Saturday, Aug. 4th
Last night was another long and uncomfortable night for Alaina. She was miserable with her “itching” spell just about all night. It wasn’t until they gave her Morphine around 3 a.m., that she rested peacefully until around 10:30 this morning. She is still having times that she itches more than others, but today hasn’t been anything to compare with last night. They have been alternating Benadryl and Atarax every 3 hrs. today and also gave us hydrocortisone cream for topical use. When talking with Dr. Hilliard today, I asked could she be experiencing a yeast infection although she really isn’t as red and irritated as someone would be normally. She said “yes, and because Alaina’s counts are so low, she probably wouldn’t get as irritated because this occurs when your body is fighting infection and she has nothing to fight with.”

Alaina is currently on IV fluids, and receives Fortaz (antibiotic) every 6-8 hrs., Diflucan 1x/day, Bactrim 2x/day (only on Fri, Sat., Sun.), Zantac 2x/day, and then of course Benadryl, Atarax, Morphine, Senna (stool softener), and Miralax (laxative) as needed.

We have extremely good news concerning Alaina’s CT scan yesterday. Dr. Hilliard discussed everything with Dr. Sande (who performed the bone marrow harvest). Dr. Sande said that without a doubt what they were seeing was from the harvest!!!!! So, THE BONE SCAN IS CANCELLED!!!! They see no concerns with her hips, colon, intestines, etc. So, we are assuming that the discomfort associated with her bottom and BM’s is chemo induced.

We continue to be on contact isolation, not because she has an infection, but because we are still waiting for her to have a stool to culture. I expressed my concern that she had not produced a stool since Thurs. morning, so today we started Miralax again. It will be great to be able to get out of the room, so I’m hoping she will cooperate soon.

Dr. Hilliard said that since Alaina’s platelets seem to drop significantly each day, she really didn’t want to discharge her until she receives a transfusion. Since I gave yesterday, my platelets won’t be available until at least Mon. So, we will still be here a few more days.

Tomorrow, Jeff, Trent, and Alise are coming to the hospital after church!!!! It has been a week since we’ve seen them… and 5 days since Alaina and I have seen Jeff…..WAY TOO LONG!!!! Jeff is off work Sun., Mon., and Tues. this week, so maybe we will be home in time to spend some family time before he returns to work. You really don’t realize how wonderful and special family time is until you are in a situation that keeps you apart….I will take advantage of every second I have with Jeff and the kids from here on out!!!

I hope each of you have a great weekend and enjoy going to church somewhere tomorrow. If you’re not a member somewhere…go to our church….Dwight Baptist…you will be welcomed with open arms. Oh, how Jeff and I have missed being able to attend on a regular basis, but we look forward to the day all 5 of us can go together and be with our church family weekly.

Seeing the Light at the End of the Tunnel,

Jerri and Jeff

Friday, August 3rd
Alaina slept much better last night. She slept around 10-11 hours, with only a couple of interruptions, but she had no trouble going back to sleep. Upon awaking this morning, she seemed to feel 100% better and was her old self again!!!! They had decided last night to do a CT scan of Alaina’s abdomen and pelvis this morning to rule out any fissure or abscess that could be contributing to Alaina’s pain. All was clear in that respect, but as they reviewed the scan, they noted a couple of areas of concern on her hips (iliac crests). They took her back down for additional x-rays to take a better look.

During this time, I was at the Red Cross giving platelets….yes, me…I couldn’t believe it either, but it is true. Anyway, my parents were with Alaina when the reports came back and when they took her for x-rays again. When I returned, the Dr.’s and I met to discuss their plan. These Dr.’s are the 4 Tower Dr.’s…..not Dr. Reddy (our neuro – oncologist). See, when we are admitted for any reason other than chemo, we are under the care of these Dr.’s instead of Dr. Reddy, who we see during chemo admissions. I must say that these Dr.’s have also been very thorough in caring for Alaina!!!

They told me that there was definitely something going on with Alaina’s hips, but they were puzzled. They wanted to continue with a bone scan on Monday. This would be to rule out a possible bone infection or possible complications due to the chemo she has received. They said, however, that if it were an infection they would expect that she would be sicker and possibly run a fever for a longer period of time. They also expressed that they would expect to see her have difficulty walking and constant pain would be present rather than “waves” of pain. As we talked in more depth and they showed me where the areas were….it was exactly where they had performed the bone marrow harvest back in May. I reminded them of the harvest and they didn’t realize that she had to have bone marrow harvest rather than stem cell harvest, SO this changed our conversation totally. They are now under the impression that the changes seen on the CT scan could most definitely be related to the harvest. The plan now is for them to consult Dr. Sande, who performed the harvest and see what she thinks. We will probably hear something tomorrow.

Now, tonight a whole new issue has presented itself. Alaina began crying and complaining of her bottom itching. She was so uncomfortable, squirming around in her bed, and tearing her diaper off. After about 2 ½ hrs. of applying cream and attempting to keep her diaper on her, we contacted the on-call Dr. who decided to try Atarax (orally) to help control the itching. She had already had Benadryl as a pre-medication to receiving Vancomyocin (antibiotic), so she couldn’t have that again. It has worked so far, as she is sleeping well right now.

Alaina continues to eat well. For a couple of days all she has wanted was meatloaf and yogurt (sounds yummy doesn’t it?). Whatever…as long as she is eating something. Tonight, Molly came to visit and offered to get Alaina a McDonald’s cheeseburger……SHE LOVED IT and ate over half of it!!!! Thank you Molly!!!!

Summer received an EXCELLENT report at clinic today…counts are great and she doesn’t return for another visit until Sept. We praise God for what He is doing in Summer’s life!!! Bayleigh’s counts have come down, so she will be staying at home for the next few days waiting for improvements, but otherwise is doing well. Carolyn is home and doing well after receiving platelets today. Hopefully, she is enjoying a weekend at the lake. Meredith was d/c today and has excellent counts. She may be ready to begin her next round on Thurs. Mattea (ATRT) is fighting infection and numerous complications. Hazel, who was sent home on hospice, has been experiencing seizures. Pray for her parents to have the strength they need for the days ahead. (All of these friends are on our links)

Please, also remember the families of Ryan, Kennis, Chance, Rayley, Cody, Cory, and Josh. Going through all the treatment required in fighting cancer for months or in some of their cases…years…and now going through the emotional ups and downs of beginning a new life without their precious children must be unbearable at times.

I’m sorry for such a lengthy update, but I appreciate friends who care!!!!!

With Much Love,
Jerri

Thursday, August 2nd
I have some good news and some “not so good news”. I’ll start with the good….WBC has come up a little…260 (was 150), Hct has increased since yesterday…28.2 (was 26.3), so thank you for those prayers!!!! Platelets were again decreased…35,000 (was 55,000), so she received Jeff’s platelets this afternoon. The Dr. does think that she has been at her worst and is now improving (as far as her counts are concerned).

Now, for the “not so good news”. She has had an extremely difficult couple of days. Last night she was in a lot of pain, crying and unable to sleep for most of the night. Around 6:00 a.m., she was able to sleep about 1 ½ hrs. Today, has been much of the same…unable to sit, crying, pulling at her diaper, and unable to rest for more than about 30 mins. to an hour at a time. The only medication that has been offered to ease her discomfort is gas drops and Tylenol, and believe me…I’ve asked if there is anything else we can do….My nerves are shot, as well as feeling about as helpless and useless as I ever have in my life. They did another KUB (x-ray) on her abdomen this morning, which revealed a significant amount of trapped gas, so they feel this is most of her problem. Because she is now having numerous stools throughout the day, they have now placed us on contact isolation and are culturing her stool to rule out C-diff (infection). This means that she cannot leave the room…AT ALL!!

Possibly, we could be home by this weekend, if her stool cultures are okay, her counts continue to go in a positive direction, and she remains absent of fever….PRAY..PRAY..PRAY for these three things, as well as for her pain to subside. She and I are desperate to go home. It breaks my heart when she is so unhappy, crying, and asking to go home.

Also, please remember our friends who are in different stages in their fight against cancer.

Hoping for a more restful night,
Jerri

Wednesday, Aug. 1st
We are still in the hospital. We will probably be here until her counts start to come up or until they think she has been on the antibiotics long enough. Her cultures still haven’t grown anything, but since she is having such a terrible time with her bottom, they want to be sure that they keep her on antibiotics long enough, because her counts are so low now (WBC 150), that she probably wouldn’t present with a fever even if an infection was present.

We are disappointed, but we don’t want her to go home too soon. Also, her platelets are dropping significantly every day, so she will probably need platelets tomorrow. She received packed red blood last night, but this morning her Hct was still only 26 (it was 21 prior to the transfusion). I would like to ask that you all pray that her Hct would come up without another transfusion because it’s too late now for anyone else to donate and the blood to get to the hospital in time and we have no more of Jeff’s here in the bank.

She is still in much pain with BM’s and is unable to sit at all. It hurts so bad to see her this way. She either lies down or stands. She tried to ride a car that is up here on the floor, but she was unable to sit to ride. Thank you to our Child Life Specialist (Honey) for bringing her some toys to the room. It has helped tremendously.

I’ll go for now. Hope to be updating from home soon.

Counting Our Blessings!!!

Jerri and Jeff

Tuesday, July 31st
Alaina had some stomach discomfort throughout the night, but we managed to get some sleep. She hasn’t had much energy today either. I’ve only been able to get her out of the room a couple of times and only for a few minutes then she is ready to lie down again.

Allison (our nurse practitioner) came by this morning. She said that Dr. Reddy reviewed the CT scan and that she sees NO AREAS of concern!!! In fact, she doesn’t think that what Alaina experienced was a seizure. That is such a relief to hear!!! They said that her counts being so low could have contributed to her behavior Sunday night.

Alaina’s counts are low again, so they plan to give her packed red blood tonight and we could possibly be discharged tomorrow. Her blood cultures have not grown anything and she hasn’t had a fever for 2 days. They have decreased her IV fluids by 50%, so if I can continue to get her to drink enough, we’ll be doing well.

Her appetite has been decreased, but with her stomach issues, it’s not uncommon to not want to eat much. Today, she has eaten meatloaf, some peach yogurt, a couple of bites of biscuit, and a little juice and milk. She isn’t taking anything for nausea, they’ve taken her off of Miralax, and she is only taking Bactrim, Diflucan, and Zantac on a regular basis. I’m glad that after all she has been through, she only has 3 regular medications!!!!

The Lord has been so good to our family and has taken such good care of us. We have been blessed that Jeff, Alise, Trent, and I haven’t had any sickness to speak of during Alaina’s treatment. Our parents and friends that have helped us so much with Trent and Alise have also been healthy. My heart is moved by all of you so ready and willing to help us and lift us up with calls, emails, cards, encouraging words. I’ve not truly understood until now, the emotional, physical, and mental stress that is involved when a family member has a serious illness. After this experience, I think I will be better in tune to what others may need that are going through a tragic time. Thank you all for showing us what it means to love others unconditionally…giving generously of your time, money, and always anticipating our needs. We will forever hold you all dear to our hearts and remember how supportive you have all been and how you all prayed us through this time in our lives!!!!

Loving our Family In Christ,

Jerri and Jeff


Monday, July 30th (2nd update)
We just received EXCELLENT news……the CT scan shows no changes!!! They really don’t have any answers as to what caused Alaina to act the way she did, but the good thing is that they have ruled out any major problems. Thank you all for prayers and concern for Alaina. That’s all the news for now. Hope everyone has a wonderful evening.

Relieved,
Jerri and Jeff

Monday, July 30th
Alaina and I had a rough night, but today she is looking and feeling much better. After I updated last night, Alaina experienced some complications. I was standing by her bed rubbing her sweet little bald head (this is her new thing). I was enjoying this time that I had and was praying for her, as I do often as she is resting or sleeping. She had not gone to sleep yet and I noticed her yawning. Initially, this was not a concern, because after the long night and day we had, yawning would be expected. What was odd, was that she did this repetitively (about 10-15 times). At this point, I called for Catherine (our nurse), just because it was different. She came in and observed Alaina. During this time, Alaina was awake, alert, and responding to me when I would ask her if she was okay. Catherine went to get Tamara (another nurse) to see what she thought. While waiting on them to return, Alaina became difficult to arouse and wasn’t answering me. This resolved after only a few seconds. And she was completely normal, coherent, and appropriate!!! She could sense that I was worried about her, I’m sure because I asked her every couple of minutes if she was okay. She got to where, when I’d look at her, she would say, “I’m okay”. And one time I looked at her and she said, “Boo!” What a precious girl!!!! Thank you Alaina, for making me laugh, even when you feel rotten.

The floor Dr.’s ordered a chest x-ray and blood work. They checked her oxygen saturation, vitals, all of which were normal. They contacted the neurologist who wanted a CT scan to be performed this morning. We are still waiting for results from the scan. Her chest x-ray was normal, and blood work was normal except phosphorus and potassium were a little low. They will just give her supplemental IV fluids to help with these.

The x-ray of her abdomen revealed that she is constipated so we have started giving her Miralax. I’ve learned something new about all of this. It seems that you can have what appears to be a normal stool, but still be constipated….enough said about that, right?

Alaina’s counts are still very compromised with ANC =0, WBC = 130, Platelets = 152,000, and Hct = 23.3, but, as of yet, no infections!!!

She has eaten a little bacon and drank some milk this morning, but nothing else seems to appeal to her.

After no sleep, a long day yesterday, and an even longer night last night, I have to say I was emotionally, physically, and mentally exhausted. Jeff worked a few hours this morning and is now with Alaina and me. I’m so thankful that he is here. I’m so much better when he is nearby.

We’ll update again with results from the CT scan. Until then, please pray that she will rest well and that everything will be clear!!!

Nervous, but expect good results,

Jerri and Jeff

Sunday, July 29th
Fever has arrived…..This morning around 1:00 a.m., Alaina awoke several times crying out and calling me. When I went to check on her, she was very warm and I knew we were headed for CH. I continued to check her temp. over the next couple of hours. The highest it reached was 102.8 (temp 101 or greater sends us to the hospital). She had also had several nose bleeds, which told Jeff and me that her platelets were low. So, Alaina and I headed for B’ham around 5 a.m. For about the first 2 hours we were in the E.D., Alaina cried saying, “Home…Da, Alise, Trent”. It was only after we called and talked with them on the phone that she began to calm down. This was the first time she had cried to go home. I know she has to be tired of everything.

We knew her counts would not be good, but we didn’t realize just how much they had dropped in only 2 days…WBC 30 (was 100), platelets 2,000 (was 43,000), and Hct 17.5 (was 25)!!! No wonder she was so weak. One of the nurses told me she had never seen platelets so low. Needless to say, since Jeff just gave platelets yesterday, Alaina didn’t get her daddy’s. She will probably need them again when Jeff’s make it to the hospital. When they are that low, I’m sure more than 1 transfusion is necessary. She did, however, receive Jeff’s packed red blood. She is still just lying around, but she did manage to walk around the nurse’s station once.

I’m very glad to report that she hasn’t had fever for several hours now and it was low grade then. They still start 2 heavy antibiotics to get a jump start just in case the blood cultures show something. They also are giving her an additional antibiotic specifically because of the bottom pain, just in case there is any infection there. Just pray that it is like all the other admissions and her fever is only because of very low counts.

They also ordered x-rays of her abdomen in an attempt to see if there are any visible signs of problems that may be causing her pain.

Alaina hasn’t eaten a bite all day, so her appetite continues to be a big prayer request.

I have mentioned Cory Cross to you all and asked you to pray for him as his cancer had returned and he and his family were awaiting a revised treatment plan. Sadly, I report that he took an extreme turn for the worst and past away yesterday morning. He was fighting ATRT just like Alaina. Somehow, we failed to get his website on our links, but he has a caringbridge site (in/coryduane). Please pray for his family, as I’m sure they are devastated. He has been fighting for 4 years. Our “ATRT” family has been hit extremely hard over the past few months. We have had many losses. Please pray for these that are struggling without their children.

I would like to close with a praise report!!!!! Carolyn Thompson has gone through her last round of Methotrexate with flying colors!!!! Last round, she was in the hospital for an additional 3 weeks because of chemo induced complications. The Lord is good and we thank Him for answering prayers for this precious little girl. She is on 4 Tower with us right now, looking good, smiling, talking, playing, and enjoying the news that she may go home tomorrow!!!! Thank you all for the prayers you lifted up for Carolyn and her family. (Her website is on our links)

Also, pray for Meredith Dyer (on our links) as she has been admitted due to infection.

May your families be blessed. We love you all!!!

Jeff and Jerri Atkins

Tuesday, July 24th
Well, we went to clinic today at CH and Alaina is all tanked up on Daddy’s platelets!!!! They gave her a bigger bag today than usual. Normally, it takes about 15-20 mins., but today it took closer to 40-45 mins. for the platelets to infuse. She did great and ate meatloaf 2-3 times while we were gone. I always take her food of choice with us to the hospital. The last thing I want is for her to be ready to eat and not be able to get it. I am thrilled to tell everyone that, so far Alaina hasn’t lost any weight. She weighs 26.6 lbs. Please continue to pray that her appetite steadily increases, so we can avoid a feeding tube. Thank you to Gran (my mother) for going with us today. It really helps to have her company. Also, thank you to Granmaw (Jeff’s mother) for helping out with Trent and Alise last night and today.

I have to say a HUGE thank you to our church family at Dwight Baptist Church. We are so thankful for all they are doing in preparing meals for us. Monday through Friday, for the past 3-4 weeks, we have had meals provided for our family. Even while Alaina and I were in the hospital and Trent and Alise were away from home, our wonderful friends took good care of Jeff in making sure he eats right!!! THANK YOU ALL FROM THE BOTTOM OF OUR HEARTS!!!! I will never be able to adequately tell you how much this has meant to me. It has taken such a burden off of me. I never expected such an outpouring of everyone’s time, effort, and love. WE LOVE YOU ALL!!!!

We ask that you all pray specifically that Alaina can avoid fever. After our last round Alaina had two different admissions (each around a week in length) due to fever. It took her 6 weeks for her counts to recover enough to begin this past round. They have told us to expect it to take at least 6 weeks this time also. We would really like to spend that 6 weeks at home if at all possible. We are to go to Gadsden Ped. Clinic Thurs. of this week for blood work (as well as next Mon. and Thurs.). We don’t have to return to clinic until Wed., Aug. 8th. unless we have problems.

Just want to update about some of our friends that are in this “cancer” battle also. Andrew Long is at home. He is still recovering, as he is very weak right now (www.caringbridge.org/visit/al/andrewlong). Cory Cross (diagnosed with ATRT like Alaina) is still waiting on a treatment plan as his cancer has returned (www.caringbridge.org/visit/in/coryduane). We received an update from another ATRT friend, Owen Lyons, that he has been admitted to the hospital. We don’t know any details currently, but his mother, Cyndi, requested that we pray for him. Meredith Dyer needs prayer, as the effects of chemo are beginning to be evident in her little body (www.caringbridge.org/visit/meredithgracedyer). Carolyn Thompson is at home and getting stronger every day. She has counts again on Thurs. to see if she is ready to continue with her next round (www.caringbridge.org/visit/carolynthompson). Keaston Bell is currently in CH on the stem cell unit going through the transplant process. Pray that she has no major complications (www.caringbridge.org/visit/keastonbell). Bayleigh Phillips is returning to CH tomorrow for continuation of chemo. After tomorrow, she will have a much needed break before school starts again (www.caringbridge.org/visit/bayleighphillips). Hazel Anderson (also ATRT) had scans today to see if the treatment she is receiving is beneficial. We haven’t received updates on her yet (www.carepages.com carepage name is hazelcamille). Summer Thompson (www.caringbridge.org/visit/summerthompson), Taylor Hendrix (www.caringbridge.org/visit/taylorhendrix), and Parker O’Barr (www.caringbridge.org/visit/parkerobarr) have all completed treatment and are enjoying normal, everyday life!!!!! Kameron Lindsey is still receiving chemo, some at home and some in clinic. Janna Hamilton has a clinic visit tomorrow and will receive more chemo. Also, continue to pray that she does well without steroids (www.caringbridge.org/visit/janna). Also, Caleb Richards has been newly diagnosed and just beginning chemo for a Wilm’s tumor (www.caringbridge.org/visit/calebrichards). Please remember the families that have lost children....the families of Kennis Nix, Ryan Otto, Cody Myers, Rayley Kocurek, Chance Harmon, and Josh Musso.

Thank you for praying for Alaina and all of our friends that we have grown to love over the past 8 months.

Jerri and Jeff


Monday, July 23rd
We had Alaina’s labs drawn today, and, as expected.....we are at rock bottom. Platelets = 6,000 (anything 10,000 or less is transfusable), WBC = 100 (normal is 6-10,000), and Hct is low, but not transfusable at 32. We have an appointment to return in the morning around 8:30 a.m. for her to receive platelets. They are also going to go ahead and let her see the Dr. and get her shot of Vincristine, so we won’t have to return on Wednesday. Of course, now is the time that everything can change very unexpectedly as she is at high risk for fever/infection.
Alaina had a very restless night last night. She didn’t seem to feel sick or nauseated and didn’t seem to be in pain, but she complained of “itching” (mostly around her central line). I spend alot of the night rubbing her chest and stomach and she would go to sleep for a short period of time and wake up again. Alise and Trent also, at different times during the night called for me, but went back to sleep. Tonight, Alaina is sleeping very soundly. She still complained of itching throughout the day, so I gave her a dose of Benadryl to help her sleep. Alise and Trent are spending the night at Jeff’s parents, so I hope everything is going well there.

There are still phone calls and emails I plan to return. Please forgive me for taking so long in doing so. We appreciate everyone’s concern with our family and Alaina’s progress. It has just been so hard for me to balance everything lately. We always knew that we were blessed with wonderful friends and family, but the Lord has really shown us just how fortunate we are having all of you beside us. The Lord has also given us new friends that are walking the same journey we are.....What a blessing you have all been to us as well.

When I stop and think about the past 8 months, it seems almost like a dream (or nightmare). It’s as if we have lived two lives. I see pictures of Jeff, the kids, and me before Alaina’s diagnosis, and it seems like so long ago. I remember being happy during that time, but I guess I regret not being happier and not realizing how blessed we were...no hospitals, no chemo, no sickness, normal bloodwork, all 5 of us going anywhere at anytime without the worry of infection....Wow, how our perspective can change in only a few months. Now, we are closer to the end of treatment than we are to the beginning and all I can say is.....Thank you Lord for protecting Alaina from so many complications that could have been, and for carrying Jeff and me when we were having to make whirlwind decisions, and for placing wonderful people in our life to care for Trent and Alise in our absence. We were thrown off guard by all that we were faced, but our Lord and Savior opened and closed doors, guided Dr.’s hands during two brain surgeries, and is still assisting Dr. Reddy in making decisions regarding proper treatment. I can say that, as we are getting closer to being free of treatment, I am looking forward to the life my family has ahead. I will cherish every moment as I watch what the Lord does in and through the life of our children. Of course, this is not the plan I had for Alaina (or any of us), but I trust that the Lord has a plan, much bigger than mine and if this is Alaina’s journey.....then it is mine as well. Even in her sickness, she is such a joy and a blessing!!

Anticipating Our Future!!!!
Jerri and Jeff

Sunday, July 22nd
I guess you have all figured out by now that we made it home. I’m sorry for the delay in updating, but I must say that we have enjoyed some much needed family time. To everyone that has called or emailed, please forgive me for not responding sooner, but we hadn’t even checked the messages on our answering machine until last night and believe it or not, this is the first time I’ve even gotten on the computer.

We are all doing very well. Alaina acts as if she feels well, even though eating has dramatically fallen off. The past few days, we have done well to get her to drink enough, much less eat, but tonight I fixed meatloaf, creamed potatoes, and english peas.......SHE LOVED IT!!!! She even CLEANED HER PLATE!!!! She also ate a few strawberries today.

We go to Gadsden Ped. Clinic tomorrow for blood work and are expecting that she will need products within the next couple of days. Jeff’s blood is banked and he gave platelets Friday, so she should have everything she needs next week. Get this, I have been unable to give because of anemia and Jeff goes Friday and they tell him that they can take 3 UNITS of platelets from him....WOW, WHAT RICH BLOOD!!!!

We aren’t scheduled to return to CH until Wednesday at 9:00 a.m. for a follow-up visit.

So, let me fill you in on what we did Thursday...AS A FAMILY!!! We were discharged on Wednesday (which began Jeff’s 3 off days). We decided that since Alaina’s WBC was in the 7,000’s when we were discharged, that we would go somewhere on Thursday before her counts began to drop. We went to Chattanooga to the Discovery Museum. We had been once before, but the girls were so little that they couldn’t enjoy everything like they did this time. It was the BEST day I’ve had in a very long time. I can’t explain how good it felt to look back while driving down the road and see ALL 3 of my kids. It had been such a long time for the 5 of us to really have a fun day. Alaina did great!!! She played and had a good time, but she had to warm up to it. She seemed to feel the most comfortable in the play area for children 4 yrs. and under. The more active and bigger kids seemed to make her nervous. Of course, Alise had fun EVERYWHERE. She is the happiest, most content child. I love to watch her. She doesn’t mind if she plays by herself or with others...SHE ENJOYS LIFE!!!! Trent was alot of fun. He was into learning about things just as much as he enjoyed playing. He is so fun to teach!!! We also decided to try our luck at the IMAX theatre. It was DINOSAURS ALIVE!!! Here’s how it went.....TRENT LOVED IT.......Alaina had a death grip on me most of the time, but didn’t cry much....AND Alise cried almost the entire time, but loved wearing the glasses. All of our kids are so different, but great in their own way!!!!

We are so blessed to be able to take a little trip like we did at this point in treatment. It was a wonderful day and I was able to reconnect with Trent and Alise and Jeff with Alaina. By the end of the day, Alaina was holding Jeff’s hand and Alise was holding mine!!!

As always, we are blessed by you all and covet your continued prayers for our family. We are on the down slope of treatment now, which feels wonderful, but at the same time frightening. Thank you all and we love you very much.

Thanking God For Our Family Time!!!!
Jerri and Jeff

Tuesday, July 17th
All is well!!!! Alaina has had a good day today. Her labs look good right now…Platelets (71,000), HCT (29), and WBC (7,950!!!!!)…..an increase from 4,290 yesterday!!! Her WBC has NEVER increased at this point in treatment (at least not this much)!!!

Her appetite has decreased, but today, just out of the blue, she asked for applesauce!!! She ate about 4ozs. Drinking has really decreased, but this usually improves once we are home. They weighed her today and she weighs 26 lbs., so we are really encouraged by this. There have been rounds in the past that she completely stopped eating. We are praying that this round will be different in that she will eat something every day. So far she has.

The plan is still for us to be discharged tomorrow!!!! Jeff and I were talking on the phone a few minutes ago…..we are both so excited that we are all going to be together for the next 3 days (his off days start tomorrow). This is perfect timing. We are going to try to do some fun family things before Alaina’s counts start to drop. Please pray that we are able to do this. We are desperate to reconnect and be a COMPLETE family again.

I have to share something with you all. I received an email from a friend tonight that was very inspiring. If you have the time to check out this website, you will surely receive a blessing. www.lifewithoutlimbs.org When you get to the website, watch some of the video. This young man has quite a testimony. Watching his boldness for Christ, really made me re-evaluate my life.

God is good, even when we don’t understand His plan…He is faithful to give us what we need to live daily. I understand more and more the truth in…”Give Us This Day, Our DAILY Bread.”

With A Thankful Heart,
Jerri and Jeff


Monday, July 16th
Today has had its ups and downs. Alaina had a difficult night last night….very restless and crying. She seems to be having stomach discomfort and gas. She couldn’t sleep, so around 4:30 this morning we starting walking the halls. From about 6:30 – 9:00 a.m., we got a little sleep.

She started getting her chemo around 10:30 a.m. and was finished by 3:30 p.m. She actually ran a very low grade fever (99.7) following chemo, but after an hour or so, the fever subsided. They drew a CBC on her and it was determined that she needed RBC. Her HCT was 19 and a transfusion is required at 20 or less. My day had given blood a couple of weeks ago and Jeff had given blood last Thursday, so the blood was already at the hospital ready for her.

She ate a little better today…adding corn on the cob, a couple of bites of popcorn, and a lick or two of a saltine cracker to her menu.

This afternoon she took a 1 ½ hr. nap, but then wanted to lie down again after being up for only 1 hour. She was very whiney and just acted like she didn’t feel very well. She perked up a little and actually played when Trent, Alise, Felicia, Anna, Abby, Aliah, and Polly came to visit. Later, Tricia, Beth, and Bobbi came to visit and Alaina became really sick and vomited. She acted like she felt much better afterward. She is currently receiving RBC and is sleeping well, with no fever and no apparent pain.

Tomorrow she will receive Etoposide (over 4 hrs.) and Cisplatin (over 6 hrs.). Wed. she will receive Vincristine (IV push) and hopefully we will head home!!!! Please continue to pray for her little body as this is a tough mixture of drugs.

Please pray for Andrew Long and his family. Last night and today have been very challenging for them all. Pray for them to have the strength they need during this difficult time.

Tired and Missing My Family,
Jerri


Sunday, July 15th
We now have another day of chemo behind us. Her Methotrexate level was .06 last night, so we were ready this morning about 10:00 a.m. to continue. She received Etoposide first (over 4 hrs.). She had to remain in her room the entire time in case of any reactions that she may have. The first 15 mins. a nurse is present, because usually any life threatening effects are seen within that period of time. After the Etoposide, she got Cytoxin (over 1 hr.), during which she could come out of her room (and believe me, we did). Tomorrow’s schedule will be just like today. Please continue to pray for her. She is doing just great, with no major problems, but there is always a risk involved.

I come once again asking for you to pray for some other children we have grown to love. Cory Cross (also diagnosed with ATRT) received bad results from his last MRI. He has new lesions on his brain. They are currently waiting for their next treatment plan. You can visit his website and follow his journey at www.caringbridge.org/visit/in/coryduane I’m sure his family could use any encouraging words the Lord puts on your heart. Also, Andrew Long was just admitted as inpatient here at CH yesterday afternoon. I talked with his mother, Ann, briefly. He is very nauseated and complains of a headache. He will be having an MRI tomorrow. Please pray for promising results. His website is in Alaina’s links if you would like to visit. It is an indescribable sickness you feel in the pit of your stomach when you hear of others not doing well. We are all in this battle together and we all are pulling for each other. When one of us receives bad news it is as if we all receive it.

As Alaina and I walk around the hospital, I see hurting people….families huddled in a corner crying, exhausted parents anxiously going back to their child’s room, expressions of hopelessness. The devil would have it stop there, but we have to cling to the hope of Jesus Christ. He doesn’t promise that we won’t see hard times, but I’m very thankful that at the end of the day I can lean on my Father, who understands my hurts, fears, and pain.

Thank you for loving Alaina the way you all do and for encouraging our family. This has been such a long, hard road, but there are others who have had it much harder. We really feel that we have fallen short in adequately thanking everyone, but please know that we are forever grateful and consider ourselves blessed to have you all with us. Everything that is done…cards, emails, meals, gifts, and most of all prayers are very much appreciated.

Burdened, but Blessed
Jerri and Jeff


Saturday, July 14th
Well, it looks like it is going to be in the morning before we start the next chemo (Etoposide and Cytoxin). Her Methotrexate level is .11 and it has to be below .10, so we are very close. Everything else is going very well. She slept good last night and has eaten some bacon and drank some milk. That is about all I can get her to eat lately, but at least she is eating something. She awoke this morning around 7:30 and was in the best mood. She has been very happy and her latest thing that she really likes to do is sing and dance to the song, “If you’re happy and you know it”. It’s the cutest thing. I videoed it last night, so maybe we can get it on the website soon.

Our friend, Avery Ann, (www.averyann.net) received results from her MRI and everything is stable!!! Thank you for praying for her and her family. We have met so many new friends and they are all going through so much. Please continue to pray for their strength and for an extra dose of God’s love and comfort.

Love your families and have a safe weekend!!!

Jerri and Jeff

Friday, July 13th
Another good day!!! She hasn’t eaten quite as much as she has been, but the good thing is that she is eating. We got to visit with Trent and Alise today. It was great to see them….Thank you Papa and Gran for bringing them!

There really isn’t anything new going on. They checked her Methotrexate level tonight, but the results aren’t back yet. I would really be surprised if it is low enough to start with chemo again tomorrow. It has always taken 2 days to clear.

I am exhausted! Alaina has had me up and going all day. She has just gone to sleep, so I think I will turn in too. Thank you all for your prayers.

Missing Home,
Jerri

Thursday, July 12th
Last night was a rough night for Alaina. She finished with chemo around 9:00 p.m and shortly after became very sick, vomiting several times. She was given Phenergan, Benadryl, gas drops, and Tylenol, but still had a very restless night. It seemed as if the effects of treatment had started with her very first dose. She has never gotten sick this quickly, but I know each round can have different outcomes.

This morning when she got up, it was as if she had not gotten sick at all!!!! She ate cereal with honey, bacon (of course), and milk!!! She has been full of energy once again and has been playing and socializing, and even running down the hall!!! She has had several BM’s today…none of which seemed to cause very much pain!!!! She is taking a nap right now and doesn’t appear to be in any discomfort. Last night, I really thought we were in for a rough round, but this morning ALL IS WELL!!! It really seems to have baffled everyone, so all I can say is….THANK YOU LORD, as HE has renewed her strength!!!

Happily, I report that Carolyn, Mike, and Sarah are heading home!!! Carolyn looks great and seems like she feels good. Please continue to pray for her appetite. She is going home on TPN (IV nutrition), but that will begin tapering off. Pray for their family to have some good quality time together before she has her next treatment. Her next treatment will once again include Methotrexate (which caused all the complications this round). Pray that she will fly right through without any problems.

Once again, Trent is teaching his mother how to pray. A couple of days ago, I was on the phone with him and I said, “Trent, pray that Alaina’s pain will go away. She’s not feeling very well today.” Waiting for a response, but hearing him say nothing, I said, “Trent…Trent?” Trent responded with, “Yes, Mam?” I said, “Did you hear what I said?” His response to me was…….”I was praying to myself.” Wow!!! I’ve thought a lot about what he said and I realize that is the way I should respond. When someone asks me to pray about something, I should stop RIGHT THEN and pray. Prayer is an essential part of the Christian life….I’ve always known it, but now, I’m seeing first hand the power of prayer. Thank you Trent for sharing an important lesson with me. It just may be the answer to YOUR prayer that we are seeing in Alaina today!!!

I am very thankful for those of you who have been able to visit Alaina and me in the hospital. It really has helped me. I didn’t want to come back to the hospital again. I tried really hard not to dwell on it, but just do what I had to do. I did wait until the very last minute to pack everyone to go our separate ways, as if that would lengthen our time together. My parents are bringing the kids tomorrow to see us…I can’t wait!!! I’m looking forward to visiting with those of you who have said you are coming this weekend and the first of next week. Your support has encouraged me more than you know!!!

Also, thank you to everyone who is bringing meals to Jeff this week. He is REALLY enjoying it and it takes a load of my mind, knowing that he is eating well. It still amazes Jeff and me how all of you are taking such good care of us and meeting EVERY need imaginable. WE LOVE YOU ALL SO MUCH and can’t possibly thank you adequately.

PRAISING THE LORD FOR ANSWERED PRAYER!!!!,
Jerri and Jeff

Wednesday, July 11th

Today has been a wonderful day……THE MRI OF ALAINA’S SPINE IS CLEAR!!!!!! Also, they performed the hearing test today, which they do before she receives Cisplatin each round. Her hearing is also normal, so she can continue with the same dose as previously!!! It is now around 5:00 p.m. and they just started her Methotrexate and Vincristine. She wasn’t hydrated enough earlier in the day, so they had to wait a little while longer for her to receive more fluids. They are also giving her fluids while receiving her chemo to keep her well hydrated. Normally, they stop fluids during chemo.

Alaina is asleep right now. She has had a very busy, but very good day. We went to clinic to see Bayleigh and Janna. Both received chemo today. It was great to visit with them and their families. Also, another friend of ours, Avery, had an MRI today. Please pray for her and her family as they await results. We went to the 3rd floor activity room for about an hour, and walked the halls a lot. So, she crashed when we finally slowed down. The Hand in Paw team is going to be here tonight in the lobby, so we plan to go down after her nap and see all the animals.

Alaina continues to experience pain with BM’s, but our Dr.’s feel she is ready to continue with treatment. We are very confident in our Dr.’s decisions and feel they are taking wonderful care of Alaina. In fact, we are extremely blessed by all the medical team that has had a part in Alaina’s treatment. Our 4 Tower nurses are WONDERFUL!!! We appreciate how you have also taken good care of Elmo during this hospital stay. For those of you who don’t know, Alaina was given this Elmo by our radiation team when her treatment there was completed. SHE LOVES HIM and takes him EVERYWHERE (even to the hospital for chemo). Thank you Angela for giving him his central line (noodles) and Allison for hooking him up to an IV and for everyone else who has so patiently checked Elmo’s vitals, hearing, etc. You all really know how to handle children!!!!!

I requested prayer for Carolyn and her family as they have been in the hospital due to chemo induced problems. I am happy to report that things are much better and she may be discharged tomorrow!!!! Continue to pray for her appetite, as this is now one of the big concerns.

Well, I think I’m going to rest a little before Alaina gets up, with all of her energy lately, I need it. We are very thankful for today and all the good news that God sent our way. Thanks to all of you for praying and comforting us. Take care of your families and don’t forget to thank the Lord for each and every day that you have together!!!

Thankful for the good days,

Jerri and Jeff


Tuesday, July 10

Hi everyone, This is just a little update to let everyone know that Alaina did not have her MRI today. There was a concern with the type of sedation medicine that was planned to be used. Alaina does very well with Propaphol (the magic milk), and they did not want to change what she is responding well too. They had scheduled another type of drug that sometimes causes a rage effect when they wake up. This was not something Jerri and I wanted to risk nor did Dr. Reddy. So long story short, we spent all day without solid food and hours without any liquid for nothing. The MRI has been re-scheduled for tomorrow @ 8:30am. This will be the first on their schedule for the day. The Oncology team is very upset about the mix up, because we were holding her treatment until after this MRI. Having to deny your child food is hard enough, but to know it was for nothing is tough. They only give Propaphol on Monday, Wednesday, and Friday. This could have been communicated to make an exception. I’m sorry for the delay in posting a new update, I am at home now and have to go back to work tomorrow. Thanks for sticking with us through these difficult times. Sometimes I feel like a single parent of 2, and Jerri sometimes feels like a single parent of 1. We are apart so much it is very difficult to keep our family feeling like a family. Please pray that we will be able to have some normal times soon. It has been so long since we have been normal, it is hard to remember what it feels like. Thanks for taking the time to read and follow Alaina’s progress.

In Christ, Jeff and Jerri.

Monday, July 9th

We had an appointment this morning in clinic to see Dr., have blood work, and be admitted. Alaina’s blood work really hadn’t improved since last week, but still okay to begin chemo. Since Alaina has had so much discomfort and trouble with her bowels, they have scheduled an MRI of her spine to rule out any problems that may be disease related. It is scheduled for 10:30 a.m. so, PLEASE PRAY that her spine will be clear of any sign of cancer. In our hearts we really feel that it is only complications from her last chemo, but of course there is always anxiety with every MRI. Once we have the results, chemo can begin.

Alaina has had an excellent day!!!! She is our happy little girl again most of the time. We thank God for the blessing of good days. Jeff is here with us which is wonderful. It’s so hard to be without him. He will go back home tomorrow night to begin work again Wed.

We will update as soon as possible with results from her MRI.

Jerri and Jeff
 

Saturday, July 7th

Chance Harmon has now met his Lord and Savior, Jesus Christ. After fighting ATRT for 6 months, Chance passed away yesterday around noon. It’s hard to post this news. Our “ATRT” world has had very devastating news over the past couple of months. My heart goes out to Brian and Desirae, as well as the parents of the other children who are left to find a new life without their children. Please keep these families in your prayers.

Alaina is enjoying being at home...as we all are. She is still experiencing pain...sometimes more than others. If this is still an issue on Monday, Jeff and I may request any tests that could help us understand better what she is experiencing. Please pray that she can beat this problem soon.

In the middle of this “ATRT nightmare”, I am more aware of the blessings that each day brings. I’m thankful that last night the kids (even Alaina) and I sang, danced, and laughed as Jeff played the guitar....I’m thankful for being able to enjoy watching Jeff and the kids roll around on the floor and wrestle....I’m thankful when all three of the kids eat well....I’m thankful when out of the blue Trent tells me how much he loves me....I’m thankful that when we all go to bed, Alise begins singing and saying her ABC’s for the next 30-45 mins. (it’s music to my ears)....I’m thankful that God is a God of love and places people in our lives to remind us of the love He has for us. Jeff and I have had our friends and family hold us up when we didn’t think we could put one foot in front of the other. Thank you for the very timely visits, cards, emails, and expressions of love and concern from each of you....WHAT A BLESSING!!
Humbled by our blessings,
Jerri and Jeff

Friday, July 6th

As I begin this update, there’s a heaviness that I feel that is unexplainable to anyone who hasn’t felt the bite of cancer. On several occasions, I’ve requested prayer for a little 4 1/2 yr. old boy, Chance Harmon, who is also fighting ATRT (the same diagnosis as Alaina). The past few weeks have been tremendously difficult for Chance and his family. He has been in much pain and discomfort. Today, Brian and Desirae, his parents, updated with news that breaks my heart. They have been told that the progression of his cancer is such that there is no more treatment available. They are going home with hospice. This is a family very strong in faith, but being in this situation can test anyone’s faith and peace. Please pray that this family will find comfort. We have lost 5 children in our ATRT world within the past few weeks. We all feel the pain that each of these families feel. Alaina is doing very well at the present time, but upon receiving news such as this, I feel a sickness in the pit of my stomach, a heaviness that makes it hard to breathe, and a saddness that is overwhelming. Cancer is horrible and it steals the life out of you. I watch Alaina and I just can’t believe that all this is happening to her. I try to hold it together, but sometimes I feel that I’m going to burst into tears and be unable to stop. I continue to read the updates of other families that have gone through losing their children, and the struggles and heartbreak that they are experiencing, you can’t help but ask WHY? I don’t question God’s sovereignty....He knows what is best, but it doesn’t make sense to us at the time.

Also, Hazel Anderson is battling ATRT and has been offered a Phase 1 clinical trial. Her cancer has spread and this is the only option at this time. Pray for this family, as they are administering the chemo at home. Pray that this will be a big breakthrough in Hazel’s fight.

I also would like to ask you to continue to pray for the families adjusting to their new lives without their children...Kennis Nix, Ryan Otto, Cody Myers, Rayley Kocurek, Josh Musso. Only the Lord can give them the comfort needed during this time.

Thank you all for the prayers you have offered for Alaina....she is doing very well. Still having a little pain, but much improved. Her counts were better yesterday and they said she could begin today, however Jeff and I wanted to have the weekend with all of us together and Alaina feeling better before beginning the next round. We will be admitted Monday morning at 9:00. She will receive IV fluids Monday and then begin chemo Tuesday. My heart skips a beat when I think about it. It took her 5 weeks to recover from this round and that makes Jeff and me very nervous about what the next 2 rounds hold. PLEASE PRAY! The Lord has protected her this far and we know that He will continue to be with her.

Check out the websites on Alaina’s links. We have put many of our new found friends on there. Some still fighting and some at home, finished with treatment, and doing well.

With Love and Thankfulness,
Jerri and Jeff

Wednesday, July 4th

Well, today has started out much better than yesterday. Yesterday, Alaina was in a lot of pain. She cried and was just miserable most of the day. I called and talked with Allison, our nurse practitioner, who ordered Miralax, which eventually gave her some relief. She is like a different child this morning. She is eating, playing, smiling, and laughing normally!!!! The Lord has answered another prayer. Thank you all for praying for her. Tomorrow we return to Gad. Ped. Clinic to check counts again. Please pray that they have improved.

We are also thanking the Lord that Bayleigh Phillips received a good report yesterday...No new growth of tumor and bloodwork was good enough for her to receive next dose of chemo!!!!!

We wish you all a very happy 4th!!!

Jerri and Jeff

Monday, July 2nd
Just a quick update to say that it looks like it will be at least Fri. before we return for round 5. We had bloodwork drawn today and Alaina’s WBC had dropped since Fri. It was 2400 today and was 4900 Fri. What they watch as far as letting her begin another round is the ANC (absolute neutrophil count). It has to be 1000 or greater and right now Alaina’s is 740. Her RBC/Hct and platelets are in good shape.

Alaina continues to have problems with her bottom. I know this isn’t the best subject to discuss, but it is all part of the effects of chemo and can be a big issue. She cries as if she needs to have a BM, but then she produces nothing. She hasn’t had a BM since about 1 a.m Sat. morning. Other than this issue, things are GREAT. She isn’t in pain all the time and plays, eats, and sleeps normally....PRAISE GOD!!!!

We are to return to Gad. Ped. Clinic on Thurs. to see if her counts are ready to begin again. Specifically, I’d like to ask you all to pray for her neutrophils to be where they need to be and also that her bowels and discomfort improve before the next round. I really don’t want her to enter another round with preexisting problems. Up until now, she has been fully recovered before we started again.

Thank you all and I’ll let you know something after Thurs.

Enjoying our family,
Jerri and Jeff

Saturday, June 30th
We went back to Gad. Ped Clinic yesterday for counts....We received great news. WBC=4900, Platelets=158,000, Hct=27.4 Hematocrit was low, but the others fell within normal limits (however on the low end). They told us we could stop the Leukine shots!!!! Alaina seems to be feeling better with decreased pain since giving her Senna (stool softener). She is still eating great...I weighed her yesterday....almost 28 lbs.!!!! Alise weighed in at 34 lbs. and Trent at 42 lbs.

We are blessed to be having such good days. We are beginning to see the light at the end of the tunnel. We don’t know what the future holds, but we pray that the treatment will be just what Alaina needs and she can once again enjoy her childhood. We see so many children having horrible complications with treatment. We’ve had some, but the Lord has really protected Alaina from any serious or life threatening complications....We know that it is the prayers of His people. We love you all and are fortunate to have such wonderful caring friends and family around us. You never know when your world will fall apart or you will receive devastating news about someone you love.....surround yourself with believers...it’s unbelievable how the Lord helps through His people!!!!!

Please continue to remember some of the ones dealing with cancer taking their loved one.....the family of Kennis Nix, Ryan Otto, Charlie Porter, baby Rayley (ATRT), Cody Myers (ATRT), and Josh Musso.

Carolyn Thompson is currently in the hospital (CH in B’ham). She and her family have become dear friends of ours. They all really need extra prayers as this past week has been tremendously difficult. Her website is www.caringbridge.org/visit/carolynthompson if you would like to send them a well wish. Also, pray for Taylor Hendrix as she injured her arm (this is the arm she has had reconstructive surgery on). Also, say a special prayer for Bayleigh Phillips as she will have an MRI and bloodwork on July 3rd. We also have a praise report...Summer Thompson is doing very well off treatment and has recently received good reports from bloodwork/tests!!!!!! Claire Devins (ATRT) has completed treatment at St. Jude’s and has returned home to California!!!!!! Of course, there are many more that have needs that maybe I’m just not aware of.

We hope that you all have a great 4th. If you don’t receive an update in the next few days, just know that all is well. We love you!!!

Jerri and Jeff

Wednesday, June 27th
We had a good visit at clinic today. Alaina’s counts are climbing....ANC (1000), Total WBC (almost 2000), Platelets (104,000), HCT (26)....All still below normal, but much improved since last week. Alaina also weighs almost 27 lbs. ( up 1 lb. since last week). Her appetite is GREAT...we can tell there are alot of prayers going up concerning her appetite!!! All her electrolytes are good!!! Her reflexes are a little diminished, but Dr. Reddy said that this should improve once she is finished with Vincristine. Her next MRI will be sometime in Sept. We don’t have an exact date yet. She has started having discomfort with BM’s again. This is also a complication that occurs with the type chemo she is receiving. Speaking of chemo....we return next Thurs., July 5th for round 5. We are getting closer and closer to completion of treatment. Of course, this thrills us, but also makes us very nervous at the same time. Some children continue to take maintenance chemo (usually orally) at home once hospital treatment is over. I asked Dr. Reddy if Alaina would be finished after round 6 or if she would have to take oral chemo. She said that we should be FINISHED!!!

The Lord has really allowed us to see how HE carries His children through times such as these. Although, I feel an ache in my heart that doesn’t seem to resolve, I do have a peace. I can’t explain it, because it’s only my Lord and Savior that gives me the strength to face another day. There are times that everything almost gets the best of me, waiting to be able to take a deep breath and relax, but then I realize that I should just enjoy the time that I’m given. There are times now (since Alaina’s diagnosis) that I do nothing around the house but enjoy my children. Their excitement about life fills me with an over abundance of joy, as they dance, smile, sing, and worry about nothing. I know that there will always be dishes to wash, beds to make, floors to mop, clothes to hang up, but my children won’t always be at home calling “Mama”. I don’t want to regret missing time with my children because I was too busy. I remember times when I was much younger, experiencing the pressures of high school, college, employment...my Daddy would say, “Be still and know that I am God”. Those words have been a comfort to me during this tragedy. The Lord wants us to rely on Him, trust Him, and watch Him work....being as little children with no worries or cares. I am thankful that He cares about my hurts and the heartbrokeness my family is experiencing....We don’t know what tomorrow holds, but it is a relief to know that we are not in control.

I learned today of another family in need of prayer. Please pray for Sherry Hornbuckle and her family as her grandchild will have surgery Fri. to remove a Wilm’s Tumor from the kidney. I worked with Sherry at the hospital for years. She is a precious lady. Their journey has just begun...pray for their strength to face what is to come.

We also met a new friend today at clinic. Her name is Janna, 16 years old, and was also diagnosed with a very rare brain cancer 3 years ago. She lives in FL. and has to travel 5 hours to clinic visits every 2 weeks. Pray for safe travels for her and her family as I’m sure they are very weary and tired. She resently set up a caringbridge site.....www.caringbridge.org/visit/janna If you could drop her a message, I’m sure it would lift her spirits.

We are upheld by you all....our brothers and sisters in Christ. We are blessed by all that you do to help and encourage us.

Learning How Fragile Life Really Is,
Jerri and Jeff

Monday, June 25th
Once we are home, I’m terrible about updating....Please forgive me. I have had the best time with my family. I realize more and more every day how blessed I am. I have a wonderful, loving, and patient husband, and 3 beautiful, happy children. The Lord has been very gracious in blessing me the way He has!!!!

Alaina is doing very well. She doesn’t act as if she is experiencing pain at all now!!! My heart ached as I watched her in pain and knowing I could do nothing to ease it...Although she would come to me as if I could. Yesterday, we saw more smiles, energy, playing, and eating than we have in a month!!! She is now eating strawberries, bologna, eggs, applesauce, bacon, meatloaf, creamed potatoes, Chick-fil-A nuggets, and drinking milk. She is taking good naps, sleeping well at night, and is not near as clingy to me (I can always tell she’s better when she doesn’t want me all the time). Alise and Trent are very good for her to be around. She attempts to do things that otherwise she would not. She tries to keep up with them and she actually does pretty well.

When Jeff, Alaina, and I got to my parents house to get Trent and Alise, Alaina was so excited to see them and they were taking a nap. We had to wait a little bit, but when they saw each other....excitement broke out!!!! It was great to see all 3 kids together and happy. Trent gave me the biggest kiss ever and was so thrilled to see us. That did my heart more good than anything. Of course, Alise hugged me a little, then all she wanted was DADDY!!! She is such a Daddy’s girl!!!!

We went to the Gadsden Pediatric Clinic today to get counts.....They are improving. Still not the best, but definitely much better!!! WBC = 1400 (normal = 4300-16000), Hematocrit = 27.5 (normal = 34-40), and Platelets 52,000 (normal = 150,000-450,000). So, things are looking up for our girl. They called us from B’ham after receiving the results and told us to continue the Leukine shots (to bring WBC up) and to come to the clinic at 9:00 a.m. Wednesday for a follow-up visit with Dr. Reddy. We don’t have a date to start chemo again yet, but after Wed. I’m sure we will. They are very thorough with Alaina’s care. We feel that we are receiving the BEST treatment we could get. And very blessed that CH is only 1 hour away.

I would also like to take the opportunity to say how much we appreciate the Gadsden Pedicatric Clinic. They have all been wonderful. We have always gotten good care, but in a time like this you learn how fortunate you are to have people around who care about your children. Several of the staff have followed Alaina’s progress since diagnosed in November of last year.....THANK YOU ALL FOR LOVING OUR LITTLE GIRL!!!!! We also receive frequent phone calls from Dr. Griffith (our pediatrician who recently retired) checking on Alaina...THANK YOU DR. GRIFFITH for taking good care of us. We will miss you, but we know we are in good hands at the clinic.

Thank you to our friends who have organized meals for our family. What a blessing this is at this time. The food has been great and I am especially grateful as this frees me up a little and takes a big burden off my shoulders. It has been difficult lately to balance everything. Once again I’m overwhelmed by the wonderful people in our lives who see a need and are so willing to help...WE LOVE YOU ALL!!!!

Before I go, I have some specific prayer requests:
We have received yet more news that is not very encouraging. One of our dear ATRT friends (Chance Harmon) is in the hospital, undergoing tests/procedures to determine what the next course of treatment will be for him. They think it may be progression of the disease, but the family doesn’t know exactly what the tests revealed yet. His family asked that we pray that Chance not experience pain, that they would know what they should do from this point on, and for the family to have strength during this time. Their faith in God and their ability to turn everything over to God has amazed me, but they still need lots of prayer. If anyone would like to visit their website and send a message of encouragement his website is www.samefight.org

Also, please continue to pray for the families of Ryan Otto, Kennis Nix, Cody Myers (ATRT), and Josh Musso. I know their families miss them terribly and are trying to cope with being without them.

Well, it’s after 10:00 p.m. and everyone’s asleep, so I better take advantage of the chance to get a little shut-eye myself. May God bless your families!!!!

LOVING HOME LIKE NEVER BEFORE!!!!
Jerri and Jeff


Friday, June 22, 2007

WE ARE GOING HOME TODAY!! We should be home about 2 o’clock and be a normal family for a while. I have missed all of us together and looking foreword to some family time. Thanks for keeping up with us. We love you all.

Jeff and Jerri

Thursday, June 21st
It’s 1:30 p.m and Alaina is sleeping. It’s been hard for me to update lately, because Alaina is really enjoying watching DVD’s on the computer. By the time I get her to sleep, I’m ready for bed too.

Last night was a long night. Alaina started getting packed red blood around 10:30 p.m. and wasn’t finished until around 2:00 a.m. Jeff spent the night with us last night. It was great to have him here during the transfusion, because I was nervous since they were unable to give her our blood. Jeff and I were able to go out to eat and spend some time together and his mother stayed with Alaina. It was wonderful. I have missed him so much….we were beginning to feel like we were single parents. Alaina had NO PROBLEMS at all with the transfusion!!! Thank you all for praying so hard. It was such a relief when it was all over.

Here’s the latest…..her WBC has come up to around 400 (it was 140 yesterday), her platelets have come down some, and RBC is good at 26 (it was 18 yesterday before she was transfused). The Dr.’s are hopeful that her counts are on the way up!!!!!! They decided this morning to stop the Fortaz (antibiotic), as well as her IV fluids and watch her and see how she does. If she doesn’t develop a fever and she is able to drink a little more….WE CAN GO HOME IN THE NEXT DAY OR TWO!!!!!

Since her platelets continue to go down, I attempted (yes, attempted) to donate today, but I had to send Jeff to the rescue. I am STILL anemic. He has the good blood in our family. He did great…no problems.

She is enjoying bacon still and actually took a few bites of applesauce this morning. All she will drink is milk and her intake is slowly increasing. Her pain is much improved, but she is having numerous bowel movements which is causing discomfort.

The past couple of days have been difficult at times….she doesn’t want to leave the room very much, she will want something and when I get it for her she cries because she wants something else, and although Jeff has been here to relieve me some….she doesn’t want me to leave her side for very long and still wants me to do most everything for her. I look over there at her while she is sleeping and she looks like an angel. She seems to be resting very well. I know she must be worn out and ready to be home and see her brother and sister. It’s been over a week since we’ve seen them.

Although this round has been extremely challenging for us, we have felt the presence of our wonderful friends and family….especially the prayers. I figured it up and since May 23rd we have only been home 7 days. This has been very difficult, but I thank God that we are not here because of an infection and she hasn’t had a fever since early Friday morning (June 15th). The Lord has brought her through so far…please pray that He will continue to protect her from any infections or complications with the last two rounds.

Several of you have asked about the next MRI. We don’t have another one scheduled yet, but I will let you all know as soon as we know what the plan is. Once again, we are thankful for each of you continuing to pray for our family.

Jerri and Jeff

Tuesday, June 19th
Not much new here. Alaina’s counts are still unchanged, except that here hematocrit is lower (19). They expect to transfuse soon. She is eating some….BACON, BACON, BACON. That is all I can even get her to try, but it’s better than nothing. The nutritionist came by today just to check in with us and be sure that we were okay. I told her I still feel pretty comfortable right now and that I felt she would do better with eating and drinking once we were home.

Alaina still just wants to lie around a lot and it’s hard to even get her out of the room, but hopefully this will change once counts come up.

Please pray that her counts will come up soon, so that we don’t have to delay treatment much longer. It’s very important that we are aggressive with this cancer so that it is gone forever!!!! I would like to ask for you all to pray for Chance (ATRT friend). He has had a hard day with nausea and sickness and could use some extra prayers. His website is at www.samefight.org (Chance Harmon).

I am excited that Jeff is coming to stay with Alaina and me tomorrow night and Thursday. It will be good to spend some time with him….even if it has to be in the hospital. He will be off work the next 3 days, so maybe I can even go home and spend some time with Trent and Alise. If they both seem to be well, we may let them have some time with Alaina. We have all missed each other so much!!!

Thank you for your continued prayer and support!!!

Missing my family,
Jerri
 

Monday, June 18th
We are still in the hospital, but things seem to be looking up a little. Alaina’s platelets are good at this point (since receiving a transfusion), RBC are coming down and they expect that she will require packed red blood in the next few days. The problem with her needing RBC is that the blood bank at the hospital is saying they don’t have any more of the blood I donated. The way I had it figured they should have enough for at least one more transfusion. They are checking into it, but as it stands right now, if Alaina needs packed red blood, she will have to receive someone else’s. Jeff can’t give again until July 5th and I can’t until sometime in August. I asked if it would be beneficial at this time to have other family members donate, but we don’t have enough time for the blood to be processed and back. Just pray that if she receives someone else’s blood that there will be no complications.

Alaina is feeling much better…able to sit upright without pain, and has eaten a couple of slices of bacon, and a few bites of eggs and biscuit, so I’m very excited about this!!!

Lately, it seems that all I have reported is bad news in our world of cancer, but today I have EXCELLENT news. Owen, one of our friends (ATRT), received wonderful results from his MRI today. He is several months post treatment, so this is a tremendous encouragement to us, that he is beating this cancer!!!! Congratulations Owen. We are so happy and proud. If anyone wants to see this little fighter, he has a caringbridge site…. (owenlyons). Also, remember another friend, Claire (ATRT) who will have an MRI this week. She is about Alaina’s age and they were diagnosed within days of each other. She also has a caringbridge site…(clairedevins).

I appreciate more and more everyday, your friendships, calls, and visits. You’ll never know how much it helps get us through…WE LOVE YOU!!!

Jerri and Jeff

Saturday, June 16th
Well, I wish I had better news about Alaina’s counts, but unfortunately, they are still very low. She did receive Jeff’s platelets this morning, so I feel very relieved about that. I was so worried about internal bleeding. She had a good night last night and seemed to rest pretty well, only crying out a couple of times. She is still getting heavy duty antibiotics. The cultures still haven’t grown anything, so that is excellent. She is still experiencing pain/discomfort, making it very uncomfortable to sit on her bottom or to have a bowel movement. This is one of the side effects of Methotrexate, but the Dr. today told me that some of the older children who can verbalize what they are experiencing, say that they have rectal pain with low counts. She hasn’t been able to sit all day, but if she is lying down, standing, or walking, she seems to be okay. She really hasn’t been her active self this time. We have only been out of the room a couple of times and she has only felt like walking the halls once (this may be because I make her wear a mask if she is in the hall). She isn’t very excited about the idea of the mask.,

Alaina is easily entertained, so that is a blessing. She is enjoying watching Dumbo, Barney, Elmo, and some of her other favorites. Thanks to Barb and Jared loaning us their laptop, we also play games on playhouse Disney, PBS kids, etc. I am also very thankful for the computer, because I feel somewhat of a connection with the outside world, which helps with my sanity.

I will update again tomorrow, hopefully with news of increased counts. Please pray that Alaina will begin to feel normal again soon. I miss walking the halls, riding the elevators, and playing in the play room. Also, pray that her pain will begin to subside. We are also very concerned about how hard this round has been for her and we still have 2 more to go. Pray for Alaina’s strength and her ability to recover fully from the effects of treatment.

Happy Father’s Day….May all you father’s feel loved and appreciated for all you do in the lives of your families. Thank you Jeff for being the father that you are to our children and making me a very happy wife and mother. I MISS YOU SO MUCH! I look forward to next year when we can all be together on this special day.

Realizing The Gift Of Each Day We Are Given!!!!

Friday, June 15th
Where do I begin? I’m sorry for the delay in updates, but once we get home, time is so short. I am heartbroken as I write about the losses that we have experienced the past several days. Our ATRT friend that had been struggling with the effects of this disease, is no longer struggling….Cody went to be with our Lord and Savior. It is a sad time for us and his family, but he is in the arms of his creator…FEELING NO PAIN!!!! Ryan Otto…one of our newly found friends, also has been healed of cancer and has gone to heaven. And lastly, one of our dear friends that we met during our first round of chemo….Kennis Nix, is sitting in Jesus’ lap, walking the streets of gold, and feeling WONDERFUL….no sickness, no pain, and no chemo!!!! Yes, my heart is heavy for these families, as I can truly relate to the pain and emptiness they must feel. We love each of these families and ask you to pray along with us that the Lord will comfort them. Another prayer request is for the other children who are also battling cancer, but learning that some of their friends didn’t beat the disease here on earth. These children have to grow up fast, as they are faced with live changing situations at such a young age. Pray for their families to find the right words for their children.

Alaina began running a fever last night around 10:30 p.m. When it reached 101, we headed for CH. They admitted us and we were in a room around 5-6:00 a.m. We are not on 4 Tower yet, because they are so full. We are on 5th floor, but as soon as a room becomes available, I’ve requested to be moved. Not that I don’t trust the staff here, but everyone knows Alaina on 4 Tower and as crazy as it sounds…It’s home to us and the staff have become our family away from family.

They have begun all the same things as last week….antibiotics, checking temp regularly, etc. Alaina is having some pain this time, but right now Tylenol is seeming to help. She hasn’t eaten a bite all day today, and drinking is very limited. Her platelets are extremely low (3,000), as is her WBC (200). We are anxiously awaiting Jeff’s platelets. Yes, Jeff’s again…I tried to give, but once again…I’m anemic. They gave me a B-12 shot and plan to give me one once a week for a month, then 1 a month for a while. Maybe this will help.

We are in need of extra prayer…we are very tired and exhausted….missing our family time….and saddened by the news we have received lately. Thank you all for loving us the way you do. It is truly our strength!!!

Love in Christ,
Jerri and Jeff

Monday, June 11th
I guess you can all tell by the delay in updates that WE ARE HOME!!! I’m sorry, once we are home, there are so many things to do that updating is hard. Alaina was discharged Friday around noon. She is loving being home (and so am I). We had labs drawn today (in Gadsden) to check blood counts, renal panel, and magnesium. We will have results on these tomorrow. Alaina is doing well and seems to be feeling well. Her eating is somewhat better at times. Oatmeal, once again, is a favorite. The hair that was growing back since radiation is now coming out, but she has the sweetest little bald head I’ve ever seen. I really expect that her counts are on the upswing. I sure hope so, because we are scheduled to return for another round of chemo a week from Wednesday. It seems alot quicker this time, but the sooner we go...the sooner we are finished.

Thank you all for your prayers the past couple of weeks. I guess since we were in the hospital so much, and away from our family, this seems to have been my roughest time throughout her treatment. I was so homesick and CANCER was just getting the best of me. It is so hard to think about cancer all the time. We have to because that is our life right now, but in the hospital we meet other children and their families and grow very close to them. If they get bad news, it’s as if we do too. We all eat, breathe, sleep, and awake to cancer and it’s effects daily. I never realized how cancer takes hold of your life and effects every emotion possible....but it does. I also just learned of one of our precious friends, also with ATRT, that passed away this weekend. Please pray for little Rayley’s family as they begin coping with life without their little one. Also, Cody...another friend with ATRT, is in his final days with his battle. Please pray that his family will have the strength they need during this time. It is so hard to follow these children, grow to love them, and also realize that what is taking their lives, is what my baby is fighting....Oh God, how I pray for your intervention is protecting Alaina from this horrible disease!!!! I feel like Trent, when he stated this morning, “I wish chemo would go away.”

We have many other friends that are at different stages in dealing with cancer, Please pray for them. We all are in desperate need of God’s love and peace, but most of all emotional healing and strength. Thank you all.

With a heavy heart but plenty of hope,
Jerri and Jeff

Thursday, June 7th
I didn’t update again last night because I really didn’t have any news about whether or not Alaina has an infection…really, I still don’t know. The results are not back yet. All of the other cultures on her stool are back and there was nothing!!! They said that it takes sometimes up to 24 hrs. to know about the infection. So….here we are still isolated in our room. I’m going crazy, but Alaina has been very content and pleasant….she truly could be making these 2 days seem like 2 weeks, but she has been a very good girl. With every new situation we are faced, I learn more about what a blessing Alaina is. I’ve got to tell you all an example of how cooperative she is….Since we have been in the hospital this time, she has begun to ask for the shot that she gets at night (to bring WBC up). All of the nurses can’t stand that she is so sweet about it, so none of them want to be the one to give it. She has even begun to request which nurse she wants to give it…last night it was Tamera. WHAT AN ANGEL!!!!

Still no fever since early Saturday morning….blood cultures show nothing!!! ANC is still 0 and therefore we still have to be cautious about infections, fever, etc. Her magnesium is a little low, so as of last night, she is being given a supplement. Eating is still very sporatic. It is 1:15 p.m and, so far, she hasn’t eaten anything.

Her platelets are starting to come down again…a transfusion was not critical at this point, but Jeff’s platelets would have expired today, so they went ahead and gave them to her.

They are saying that we can probably go home tomorrow sometime, with the understanding that if she spikes another fever or has any complications, we have to return to the hospital. I told them we would take our chances…I WANT TO GO HOME!!! I miss Jeff, Alise, and Trent so much. It seems like we haven’t seen them in weeks.

Hope you all have a great day. Your friendships mean everything to us!!!!

Believing in God’s healing power,

Jerri and Jeff


Wednesday, June 6th
I had hoped that I would be updating from home, BUT that isn’t the case. We had a better night last night…more sleep!!!! Alaina slept until 10:00 this morning and is acting like she feels much better. She ate some blueberry yogurt, bacon, and milk….a BIG improvement!!!! That’s the good news….now the not so good news…We are having to remain in our room under what they call contact precautions. This is because they suspect Alaina may have an infection caused from the antibiotics she has been given. This type of infection can spread to others, so everyone that comes into the room has to gown and glove. They are culturing her stools to check for this infection, SO pray that there is NO INFECTION and we can get out of the room soon. We both are getting extremely tired of these 4 walls. We have a few books, toys, and Barney videos, but she is really wanting to socialize!!!!

Hopefully, I will update with good news of no infection later today!!!
Hope you all have a great day. Thanks for your prayers!

Jerri

Tuesday, June 5th
Last night was another night without very much sleep, but she did take a couple of naps today. It is now 9:30 p.m. and Alaina is asleep, hopefully for the night. Jeff’s platelets were here first thing this morning. We were so glad because she wouldn’t have been able to wait much longer. Her platelets were down to 7,000. RBC counts were great today because of the transfusion yesterday, and WBC is now at the very bottom. Her ANC (absolute neutrophil count) is 0. This is what really determines her ability to fight infection. So, during this time we really have to be careful. It limits our walks around the hospital and rides on the elevator, since I haven’t been successful in getting Alaina to wear a mask. Please pray that her counts make a dramatic turn UPWARD so that we can come home soon. They will keep us here and continue IV antibiotics until this happens.

Still no significant improvements with appetite, so this continues to weigh on our minds, but overall I do believe she is feeling better. She is smiling, laughing, and playing more. She is beginning to interact more with our nurses without saying her favorite word….”NO”. They are all so good with her and love her unconditionally. Thank you to all the 4 Tower nurses and staff for loving our little girl the way you do. We are blessed to have you taking such good care of us!

I mentioned Ryan Otto a few days ago. Please continue to pray for him and his family. I talked with his mother today and they are going home with hospice. Pray for them to have unexplainable strength and peace.

Today I heard the best news that I have heard up here…..I was talking to the family of a little boy, 17 months old. They are going home tomorrow. They were admitted under the expectation that he had leukemia, but as it turned out it was a viral infection!!!! What a relief this family must be feeling. WHAT A BLESSING!!!!

I know this update is not as long winded, but I am exhausted. I’m going to get some sleep while I can. Hopefully, my next update will be from HOME!!

Praying and Believing,
Jerri and Jeff

Monday, June 4th
We have had a rough time last night and today. Alaina hasn’t acted herself at all. I’m sure it is because her counts are so low and she just feels rotten. It is around 6:30 p.m and she is about halfway finished getting red blood cells. She has fallen asleep, or it would be impossible to update. She has really been high maintenance today. She really needs those platelets. She has had bloody drainage from her nose throughout the day, but nothing uncontrollable. They expect the platelets to be here sometime tomorrow.

Alaina still is without fever!!!! The cultures haven’t grown anything!!! They said today that her WBC is still so low (60) that they want us to stay until they start coming up. They don’t mess around with low counts and I’m very glad. I wish we could be home with Jeff, Alise, and Trent. It’s really hard being away so long. By the time we get home, we will only have a couple of weeks at the most before we return for the next round of chemo. Jeff and I have to keep telling ourselves that all of this won’t last forever and hopefully we can soon return to our normal way of life. It is hard to put into words how difficult it is for the 5 of us to be apart. Jeff feels that he is missing out on Alaina, I feel I’m missing out on Trent and Alise, but yet we have to do what we have to do. You just feel so torn and it’s not a fun place to be. I know many of you know exactly what I mean, you want to be the parent you should be to all of your children.

Trent and Alise were with my parents last night and are staying with Jeff’s parents tonight. I seem to talk all the time about how hard it is on Jeff and me, but it hasn’t been easy for our parents either. They have had to make changes in their schedules and have made themselves so available to help, often times with very little notice. We know they are tired too and we hope they realize how much we love and appreciate them. Without them, we don’t know what we would do.

Alaina has eaten just a few bites of chicken casserole today and a few sips of milk. Not much…but a start. Please continue to pray about her appetite…she has lost around 2 lbs.

I have had several phone calls today that I haven’t been able to return yet. Please know that I’m sorry for this and that I will get back with you soon. The schedule here is so unpredictable and gets very crazy at times. I love you all and appreciate your concern. Please continue to check on Alaina. It helps to know that she has so many precious people pulling for her!!!!

Believing in COMPLETE healing,
Jerri and Jeff

Sunday, June 3rd
We had a pretty good night. Alaina and I both took a very late nap last night and didn’t get up until around 7:30-8:00 p.m., so we didn’t go to bed for the night until around 10:00 p.m. Alaina slept well and awoke with a smile. Her counts continue to drop….WBC = 40, HCT (Hematocrit) = 23.1, and PLT (platelets)= 16,000. They wanted to give her platelets today, but Jeff’s are not here yet, so probably tomorrow. She will also probably receive whole blood tomorrow as well. She is still trying to stay active, but she gets tired very quickly now.

So far the blood cultures have not grown anything, so this is wonderful news. That means that her fever is caused only by her low counts and that she doesn’t have an infection!!!!!! The doctor came in this morning saying, everything was moving in a positive direction. She is still receiving antibiotics and may continue through tomorrow, just to be sure. They like to watch the cultures for 3 days. Also, she is taking Zantac (stomach), Zofran (to prevent nausea), Bactrim (antibiotic that she takes after having chemo), Diflucan (to prevent fungal infections), and Leukine shots (to assist in bringing her WBC up). We are continuing to use the Peridex and Biotene mouthwash to prevent mouth sores (so far this has kept her from getting any).

Alaina doesn’t seem to be in any pain and the only discomfort she has is the itching (her head, stomach, around the top of her diaper, and around her central line). The Benadryl they are giving her helps, but sometimes she still gets to itching and I rub her down with some ointment. She loves for me to do this and will lie still 30 mins. – hour soaking it up.

She still hasn’t eaten anything solid since Friday morning. Usually, by now, we have found something that she will at least attempt to eat, so this is a great concern for me. She really isn’t drinking enough either, but once we get home hopefully this will change.

Well, we have a new interest….BARNEY!!! They had some videos here, so I stuck one in just to see what she would think….SHE LOVED IT!!! Daddy will be so happy. Just kidding, Barney has always annoyed Jeff, but there is only so much Dumbo I can take! ha

Alise and Trent are doing well. They went to Foggy Hollow yesterday and had a great time. They are at church with Jeff today, I’m sure enjoying every minute. When they are unable to go, Trent quickly tells us how much he misses his church. We are thankful for their teachers that make learning about God and Jesus so much fun. This is really all that matters in life….our relationship to God!!!

One of our sweet little friends is in the hospital with us this time receiving chemo…Carolyn Thompson. Please pray for her and her family. They have really had a lot of things going on the past 18 months. You can visit their website at www.caringbridge.com (carolynthompson).

Please pray specifically for a precious family that we have met recently….The family of Ryan Otto. This is a family going through an extremely difficult time, but always manage to have a smile for everyone. The support of family and friends that we have witnessed has been remarkable. This speaks volumes about how much this family is loved. I would like to thank them for being so kind to Alaina and me. I wish that there were something that could ease the pain for them. We know SOMEONE who can, so please pray for strength and peace during this time. His website is www.caringbridge.com (ryanotto)

Thank you for continuing to follow Alaina’s progress. It means a lot that so many have stayed by our side these last 7 months. You’ll never truly understand how the support gets you through, until you’ve been there. May you all be blessed because of your kind and caring spirits….WE LOVE YOU!!!

Hopeful and Believing in Miracles,
Jerri and Jeff
 

Saturday, June 2nd
Well, we spent two nights at home and now we are back in the hospital. Alaina was doing well until she awoke from her nap yesterday around 4:30 p.m. Her face was flushed and I could tell by the touch that she had a fever. It was 102, so we knew we were headed to the hospital. Once the fever reaches 101, they admit you to begin antibiotics. Jeff was still working, so I called him and told him what was going on, and then made arrangements for Trent and Alise. My daddy stayed with them until Jeff got home and my mother rode to B’ham with Alaina and me. I’ve had to go alone before and it sure is a lot easier to have help. It’s hard to care for Alaina and get our bags to the room alone. Once again, Jeff and I are so thankful for our parents helping us the way they do….WE ARE BLESSED!!!

Alaina received two very strong antibiotics last night and will continue to get them for several days. One of which she had a reaction to before. They called it “Red Man’s Syndrome”. Since she has a history of having a bad reaction to it, she was pre-medicated with Benadryl, however, she still reacted to it. Her entire head and face was red and hot, except for her cheeks. If you have ever seen this type of reaction, there is no mistaking it. The second dose she received was given to her slower (over 2 ½ hrs.), which helped. She is still itchy, but she was itchy at home from the Etoposide (chemo) she had received anyway, so it may be a combination of the two things.

Her White blood count (WBC) is extremely low at .31 Her other counts are coming down also, but she is not ready for a transfusion yet. We have whole blood ready for her, and Jeff is giving platelets today which should be ready the first of the week.

Alaina slept very well last night. Of course, we slept in a little, since we didn’t get into a room until almost 1 a.m. She has already been out walking and riding up and down the hall. I thank the Lord every time she is feeling like playing and being a 2 yr. old.

Please pray for Alaina’s appetite….she hasn’t eaten any solid food since yesterday at breakfast. It seems to be harder this time finding something that sounds good to her. She is continuing to drink, but every day that seems to be less.

My children are such an inspiration to me…
Alaina is most of the time happy, even during this horrible treatment she is receiving. Last night during our 5 hr. wait in the E.R., she was absolutely precious. Never fussed or cried and I know she was tired. She still takes her medicine without any problem, which is truly a blessing. Thank you Alaina for your wonderful spirit and your will to live and be happy during this time!!!!
Alise is always happy and energetic. She is truly content in every aspect of the word. She is very easily entertained and doesn’t mind being swapped around from person to person. She is loving and encouraging to Alaina and to all of us. Alise, you are our bright spot!!!
Trent…what a little man he has become in the last few months. He loves and cares for his sisters so much. He gives us voluntary hugs, smiles, and always has something to say or do to make us laugh. He will usually do something, then say, “Mama, does that make you happy?” Yes, Trent…You make me extremely happy. Thank you for being our encourager.

I never really thought about learning from my children. I had expected that we would teach them, but boy did I have a lot to learn about how children can help you in the hard times..Thank you Lord for giving them to us and allowing them to minister to us.

Lastly, please pray for our friends that are having an especially hard time right now. Some have recently lost a loved one, some have only days/hrs. and some that are battling relapses. We have made friends with many families who are also battling ATRT…some have gotten excellent news lately, and some have not. Of course, all of us that have had the diagnosis of cancer need prayer….it’s a long hard road.

Believing in Miracles,
Jerri and Jeff


Thursday, May 31st
Sorry I’m a day late letting everyone know that WE ARE HOME!!!! We got home yesterday afternoon. Alaina has had a good time playing and being Alise and Trent. Trent didn’t come home until today because he has had a fever and we were giving him plenty of time to get over his bug. It is wonderful having my whole family under the same roof!!!!

Alaina is doing really well. She is acting a little tired, but still manages to keep up with Alise most of the time. She has developed a rash from some of the chemo that itches and makes her uncomfortable, but Benadryl helps for the most part. She hasn’t been sick at all since being home. She did get a little sick on Tues. night at the hospital. We are giving her Zofran on a regular basis for a while to stay on top of the nausea. We have learned that it’s hard to catch up if she starts getting sick.

She seems to be liking oatmeal again. She ate a good serving this morning with about a cup of milk. She ate a couple of bites of creamed potatoes and carrots for supper and has drank some juice throughout the day. She will say that she wants something, but when I get it for her, she changes her mind.

We go to Gadsden Ped. Clinic on Monday for bloodwork. They think she will need blood products by then. Our next clinic visit is Wed. at which time we will she Dr. Reddy for follow-up and get another shot of Vincristine.

The main things to pray for right now are: 1. That as her counts start dropping (they already are because we have noticed a small amount of blood draining from her nose), she will not get a fever or infection. 2. That she will continue to eat and drink enough to maintain her weight and keep her hydrated. 3. That we can continue to control her nausea so that she doesn’t get sick. 4. And, of course that the Lord will continue to heal her body and that she will have no severe long term (or short term) effects from her treatment.

It is such a blessing to be able to come to all of you prayer warriors out there and request prayer. Thank you for praying us through, when often times it’s hard for us to find the right words. We appreciate so much the cards, words of encouragement, gifts, meals, gas cards, financial support and all the wonderful and thoughtful things you all have done for us. So many things have been done for us to make this time easier...Thank you all. We love you and appreciate you more than we could ever express!!!! May God bless all of you!!!!

Jerri and Jeff

Monday, May 28th
Last night was a really long, hard night for us. Alaina didn’t sleep much at all, crying off and on (mostly on) all night with stomach pain/gas. After receiving phenergan, benadryl, gas drops, and Tylenol, (around 5:30 a.m.) she began getting some relief. She slept for a couple of hours and chemo began around 8:00 a.m. She and I slept almost the entire 5 hours that we were receiving chemo. She did wake up long enough to eat a good breakfast…bacon, eggs, and a few bites of biscuit with jelly.

Alaina has acted like she has felt really well this afternoon. They did start her on Zantac to help with her stomach.

We got very good results from her hearing test today. They said her ears were great. No detection of any hearing loss and said in fact, the results were above normal limits!!!! What a blessing!!!!

It is now a little after 6 p.m and Alaina has been asleep for an hour. I really hope she sleeps well tonight….We both need it.

We will continue with chemo tomorrow…Etoposide and Cisplatin and then we should be home Wednesday!!!!

Thank you for remembering Alaina in prayer. The prayers are really working. The Lord in good!!!!

Jerri and Jeff
 

Sunday, May 27th
Alaina’s Methotrexate levels were low enough today to continue with chemo. She received Etoposide (given over 4 hrs.) and Cytoxin (given over 1 hr.). She will also be getting several doses of MESNA (which is a rescue drug for Cytoxin). She has to remain in her room during the 4 hrs. she receives Etoposide because she could have some severe reactions and they monitor her closely. She slept a little, but most of the time she colored and watched “Baby Songs” and “Dumbo”. As soon as we could leave our room, she was on the “Dora” scooter…all smiles…and moving on!!!!! I am so thankful for the energy she has. Thank you all for praying for her strength. It has to be the prayers, because she is the only child I have seen with this kind of energy since we’ve been here.

Tomorrow chemo will consist of exactly what she received today. Then Tuesday she will receive Etoposide and Cisplatin. Then we should be home on Wednesday!!!! I can’t wait to be home. Alaina and I get very home sick during the time we are in the hospital. Please begin praying now that Alaina will remain healthy with NO FEVER or SICKNESS when her counts drop.

As I said in a previous update, Alaina’s appetite has dropped significantly, as well as her willingness to drink. Today, all she had was 2 ½ containers of peach applesauce, a couple of bites of a McDonald’s cheeseburger, a few ounces of grape juice, and a couple of sips of milk. She now says “No” to most everything that she was enjoying when we were first admitted to the hospital. Please pray that once she is home we will find some things that she will eat. If we don’t happen to offer something that sounds good to her, she will just go without. We, of course, don’t want her to end up with a feeding tube like before, so this is already a concern.

Alaina has not had any nausea or vomiting yet and hopefully she won’t. She is given Zofran every 12 hrs. regardless, just to stay on top of any sickness she may experience. We ask that you also pray for her to remain free of sickness during her treatment. Alaina is having difficulty sleeping. She seems to be having some stomach pain that keeps her awake. We have been trying a couple of different things, but she continues to awaken during her sleep and is very restless. Pray that this will subside quickly. She really needs to rest.

Alaina is functioning as a NORMAL 2 ½ year old little girl!!!! She is speaking more, using 2-3 word phrases at times. She knows all of her colors. She follows 2-3 step commands. Her fine-motor and gross-motor skills are progressing well. (Since the bone marrow harvest, she has not been able to pick up something from the floor and return to standing upright, or transfer from sit to stand independently, however yesterday this changed and she is getting much better with this skill!!!) She wants to be independent in EVERYTHING!!! Most of the time when we try to help her she responds with “No, “Laina” do it.” I thank the Lord that she desires to be independent!!! She is usually so happy, even while receiving these very hard chemo drugs. It amazes me to watch her dance, when she should be grumpy from being in her room 4hrs. straight…….to get a voluntary hug and kiss, when she hasn’t slept much the night before…..to see how well she takes her medicine (by mouth), when the awful face she makes tells me how terrible it must be. She has taught me so much at such a young age. Thank you Alaina for making this experience easier by your sweet, sweet spirit. You truly are an angel and we are blessed by your presence in our family!!!!! WE LOVE YOU!!!

Please continue to pray for a miracle!!!!
WE LOVE YOU ALL!!!

Jerri and Jeff


Friday, May 25th
Today has been a much better day. Alaina woke up this morning happy…all smiles…and ready to hit the halls. We went to the play room for several hours. She had a ball. They have a volunteer (Ashley) who Alaina LOVES. She sat in her lap and played for the longest. She rode a “Dora” ride up and down the halls like a mad woman!!! Her energy amazes everyone.

Alise is doing much better…no fever….increased appetite…and more herself. Thank you for praying for her.

I had to give blood today so that it will be back and waiting for Alaina when her counts begin to drop (which is usually right about when we are discharged and get home). I have been having trouble with anemia. Every time I go to give blood or platelets, I am either turned away because of being anemic or I am borderline and just barely able to give. I have been taking iron and vitamins, but today I was right on the cut-off level at 38. My stress level gets really high when I go to give, and especially today because Jeff just gave a couple of weeks ago for the harvest, and I knew that it was all up to me this time. All went well and the blood is on its way to being processed!!!

Our friend Taylor Hendrix (her link is on our site) received her LAST CHEMO today, so we all had a big celebration in her room around 5 p.m We are so proud of her!!! Congrats Taylor…We love you!!!

Please continue to pray for Kennis Nix (link on our site too). She and her family have really had some challenging times. Pray for strength….wisdom….and peace, but most of all healing.

We were glad to hear that Summer Thompson (also on our site) received good news on bloodwork….all her counts look GREAT!!!!

We also got to see Bayleigh Phillips today at Taylor’s party. She looks great and is doing very well.

I have also mentioned several of our ATRT friends that have become dear to us. One precious little one, Cody Myers, received very devastating news this week. I appears that his original tumor is growing very rapidly. He is now considered terminal and his family has had to make some very difficult decisions. If any of you could leave a message of encouragement, I’m sure it would really help. www.carepages.com codymyers is the care pages name. The news that this precious family has received is something that we all as parents of ATRT children fear. Please pray for them.

As you meet others going along the same journey, no matter what the particular type of cancer, you really do become involved in each others lives. I think of all these that I have mentioned and many more on an EVERYDAY basis. This is a roller coaster ride that no one can prepare you for. Along the way, every emotion imaginable is thrown at you and often at the same time. To anyone who has dealt with cancer, you know what I mean. I have had friends in the past that have faced a cancer diagnosis of a loved one. Although I really did sympathize with them, I have to say that it has only been within the past 6 months that I have really understood what they went through.

Alaina will continue to receive the rescue drug tomorrow, so our next chemo day will be Sunday. We will probably have more hearing tests Monday. Please continue to pray for Alaina’s strength and that she won’t be sick. Thank you all for standing by us and keeping in touch. It really helps to know that we have so many wonderful supportive friends and family. Everyone stay safe this weekend.

Jerri and Jeff
 

Thursday, May 24th
Hello from CH. Today was our first day of chemo. Yesterday, we just received IV fluids. They do this to be sure she is good and hydrated before treatment begins. Alaina received 2 drugs…Methotrexate and Vincristine. She will begin receiving Leukovorin in the morning @ 8:00, which is the rescue drug for Methotrexate. Her levels of Methotrexate have to decrease before they continue with the next chemo drugs. During the last 3 rounds, it has taken 2 days before she was cleared to continue, so we are looking at being here until at least Wed. or Thurs.

Alaina has not had a really good day. She has been very fussy and irritable, but still wanting to be on the move. We walked the hospital ALL DAY, except for the 1 hour nap she had. She also had a very restless night. Actually, the last several nights we were home, she would cry out a lot. I really think that she is still having some pain from the bone marrow harvest. It will have just been a week tomorrow. So, tonight I asked them to give her some Tylenol and she has acted a lot better and is sleeping peacefully now. Her appetite has already dropped off dramatically. She only ate breakfast this morning. She is on a pancake kick, so I made up a bunch of pancakes to bring with us. It has been a really good way to get her to eat fruit. I just blend fruit and put in the batter and she never notices. But, lately she has refused even pancakes. She is still drinking milk, so that’s good…and she is getting LOTS of fluids through her IV.

We saw our Speech Therapist this morning (Britney). She was pleased with Alaina’s progress. Britney is very good with Alaina and Alaina seems very comfortable playing with her. We also attempted to have another hearing test today. Alaina did well for part of it, but we were unsuccessful with the test that really shows if there is any high frequency hearing loss. Alaina was tired of testing and believe me, she let them know it!!! She screamed the entire time. So, tomorrow they want to try again. Please pray that it shows no changes since last test. If any significant changes are noted, they will adjust the dose of Cisplatin that she receives. Of course, I wish with all my heart that she didn’t have to have chemo at all, but I do hope that they are able to give her the most beneficial dose to beat this cancer.

Please pray for Alise, she began running a fever this afternoon and by tonight it was 103.7 We had planned for my parents to bring Trent and Alise to the hospital tomorrow to visit, but now that is off. We can’t take that chance. Jeff called the Dr. tonight, who said to give her Tylenol and Motrin every two hours through the night and then bring her to the clinic in the morning. I feel so torn…I want to be with Alise too, but I’m very thankful for my parents and Jeff’s parents who are taking good care of Alise (and Trent). As far as Trent, he is doing great. He really is becoming a big boy. He seems to be understanding things better and cooperating with our crazy schedule.

Before I call it a night, I have to share how the Lord brings people into your life….Of course I’ve mentioned how blessed we are to have Dr. Reddy so close to us, as she is an expert on the type tumor Alaina had. Of all the places that she could be practicing, she is right here in B’ham, only and hour away….Everyone that we have dealt with, has been absolutely FANTASTIC with Alaina (and us), nurses, housekeeping, Dr.’s, food services,etc,…A BIG THANK YOU TO ALL OF THESE INDIVIDUALS!!!!! Alaina and I saw Dr. Sachivi (her neuro surgeon) in the hall today. He took time to talk with me about how she was and where she was in her course of treatment. Because of his skill in removing ALL of her tumor, we feel she has the best chance of beating this!!!......Britney (Speech Therapist), told me upon first evaluating Alaina, that she and her family were friends of Jeff’s parents, and that she had known about Alaina from the beginning!!!!.....The Audiologist (Melissa, aka “Missy”) that performed Alaina’s hearing test today is the niece of a friend of ours from church (Pam Christopher). We often say, “It’s a small world”, but I think many times…IT’S DIVINE APPOINTMENTS!!!!

Jerri and Jeff

Sunday, May 20th
Thank you to everyone praying for the family of Josh Musso. Josh passed away this afternoon around 2 p.m. They are saddened by the loss of him here on earth, but happy for him that he is now with his Lord and Savior. Please continue to remember his family as they adjust to his homegoing.

We are doing well. Thank you for continuing to pray for Alaina. We love you all!!!
Jerri and Jeff

Friday, May 18th
The harvest is over and we are home. The surgery took about 1 1/2 to 2 hrs. They took 350 cc’s (around 10 ounces of blood). They had to give her all of the blood that Jeff donated. Dr. Sande was very pleased with the way the surgery went. She said that Alaina’s vital signs remained perfect throughout the procedure. Her surgical sites have been bleeding quite a bit, although they have compression bandages on them. They changed the dressing once before we left and Jeff and I changed them again before we put her to bed.

The entire family went today....Trent, Alise, Gran, Papa, Grandmaw and Grandpaw, and of course Mama and Daddy, which I believe really helped Alaina. She loves her brother and sister so much and longs to be a part of all that they do. When we were leaving the hospital, I was initially carrying her, but she continued to call Alise and struggled to get down and play with her. She had some difficulty at first, but as she walked, her coordination and speed improved!!!! We couldn’t believe it, but she walked all the way to the car with only hand-held assistance!!! The prayers are definitely working!!! We NEVER thought that she would WALK away from harvesting bone marrow. I thank the Lord for the strength and determination that HE has given her!!!!

She did act as if she was experiencing some pain tonight, so we gave her Tylenol with Codiene and she is sleeping well. We will be returning to CH tomorrow around 9 a.m. for a follow-up visit, so I’m going to hit the hay. It’ s been a long day, but a very good one.

We are extremely grateful for all the phone calls we have received about how she did today. Thanks to all of you for sticking with us during this LONG battle.

WE LOVE YOU,
Jerri and Jeff

Thursday, May 17th
I am very burdened by news that I’ve received today about several of our friends fighting cancer.
Several weeks ago I requested prayer for Josh Musso, the son of a very dear friend of mine.....Anita Hathorn. This morning I talked with Anita. They had to take Josh to the hospital. He was soon air lifted to UAB, where he is now on a ventilator and highly medicated to prevent seizures. After the family talked with Josh’s Dr., it has been decided that he is no longer a candidate for any additional treatment. I ask now that you pray for Josh’s discomfort to be minimal, and for his family to have the strength they need for the difficult time ahead of them.

Also, Kennis Nix. (her website is under friends links on our homepage) She and her family have become very dear to us. We met them in the hospital shortly after Alaina was diagnosed and began chemo. In the past couple of days Kennis has had seizures. Tests have revealed that the seizures are caused from progression of the disease. This has been very shocking to all of us because the results of her last scan 7-10 days ago were good. They have administered another drug as of today....Please pray for great results. Pray that her seizures will subside and that she will be better soon. Also, pray for her family. They need strength right now.

We also have many friends that are either having chemo, about to have chemo, experiencing sickness, have poor counts, or are going to have MRI’s/scans soon. Please remember them in your prayers. Taylor Hendrix, Summer Thompson, Bayleigh Phillips, Carolyn Thompson, Andrew Long, Owen Lyons, Chance Harmon, Claire Devins, Cody Myers, Cory Cross, Grant Schellhorn, Lindsey Ledwon, and Mattea Lesorgen.

Our family shares a common word with all the families I have mentioned....CANCER. It is devastating and heart wrenching. It’s hard now to remember back to the days that I didn’t have to think about cancer on a daily basis. Many days, I long to go back. I feel that I didn’t really enjoy and appreciate those days like I should have....but, I realize that my family is right where the Lord wants us, for reasons only He knows. Do I wonder why? Of course. But I know who loves us more than we can possibly imagine, and who will walk with me every step of the way, and who gives my precious little girl the strength to endure the treatment plan before her....My Lord and Savior Jesus Christ!!!!

Thank you for allowing me to share my feelings. Today has been an extremely hard day for me. One thing that I have learned through this time with Alaina, is that there are MANY hurting people all around us. My prayer is that the Lord will ease some of the pain in the lives of these people.
May the Lord Bless You ALL,
Jerri and Jeff

Wednesday, May 16th
It is 6:50 p.m. and Jeff, Alaina, and I just got home. What a long day, but I must say....A VERY GOOD ONE!!!! We received EXCELLENT news. There is still NO SIGN OF CANCER!!!!! Dr. Reddy said, “Everything looks really good. Actually, it could not look any better!” That was music to our very anxious ears.

All of Alaina’s blood work was good. She still maintains her weight at 29 lbs. (only 1 lb. less than Alise). Everyone seems very pleased to see how well she is doing. She was just a little doll with Dr. Reddy, very cooperative, and answered all the questions correctly that Dr. Reddy asked her.

Another big burden has been lifted. We have made the decision NOT to do the bone marrow transplants at this time. (Hopefully NEVER). We will have 3 more rounds of chemo as we did previously. She will have one week of chemo (in. pt.), then 3 weeks off each round. They will administer the same drugs at the same dosage (Vincristine, Methatrexate, Cytoxin, Cisplatin, Etoposide). During this time, once again, her counts will be extremely low, meaning that our entire family will be spending some quality time at home. Although we will not do the transplants, we are going to harvest on Fri. just to have a back up plan in case the cancer returns. I hate to even think like that, but Jeff and I feel it is in Alaina’s best interest to have the bone marrow stored. This type of cancer can return even though she is cancer free right now. We will just keep believing that the Lord has healed her!!!! As you all know, this decision has been one of the hardest. I really wanted the Lord to show us some definite sign, you know, fire from heaven or something. But, He doesn’t always speak that way. In our case it was a still small voice and a peace we found in the decision we gave the Dr.’s today. In the research that we’ve done, we just don’t feel that the benefits outweigh the risks.

For now, please pray for the surgery on Friday....NO COMPLICATIONS and AN EASY RECOVERY. Also, please begin to pray for Alaina’s strength (and ours) as she begins chemo next Wed.

Thank you all and we love you,
Jerri and Jeff

Tuesday, May 15th
TOMORROW’S THE DAY........ANOTHER MRI. They will be doing an MRI of the brain and spine. Please pray that there is NO EVIDENCE OF TUMOR. I’m very nervous this time. Jeff is not. He feels good about it. Jeff is my rock. He is so strong and usually his gut instinct is right, so I’ll have to draw strength from him. You know, it’s hard going through this with Alaina, but it is easier knowing that I’m going through it with Jeff beside me......for better or for worse. I thank the Lord for Jeff...his faith and his strength!!!

Tomorrow at 12:00 p.m. we have a clinic appointment for blood work, vitals, etc. We will probably see Dr. Reddy at this time and also after the MRI to receive results. The MRI is scheduled for 2:00 p.m. It will probably take an hour or so. We also meet with Dr. Sande about the bone marrow harvest and to address any questions we have about the transplants. Really, I don’t think Jeff and I have any more questions....we’re just waiting on the Lord...His timing is best, even if we wanted the answers weeks ago.

We are scheduled for the bone marrow harvest this Friday. Jeff’s blood has been processed and is waiting for Alaina at CH. We have to be there at 9:00 a.m. and the surgery is at 11:00 a.m. It shouldn’t be a very long surgery, and she will be coming home that evening if all goes well. We will return the following morning just for a follow up.

Thank you all for the love and support you show us. We are blessed to have all of you in our lives. JUST PRAY and we will update as soon as possible tomorrow.

Jerri and Jeff

Wednesday, May 9th
We just wanted everyone to know that we are still here and doing well. We look at Alaina and it’s really hard to believe that anything is wrong with her. The Lord has been so good to her and to us. We give HIM ALL THE GLORY and PRAISE for what He is doing in Alaina’s life!!!!!

Everyday I am made aware of hurting children and just people in general that are going through tough times. My heart is heavy. I keep up with many of children over the internet and communicate frequently with some of the parents. Some with the same disease as Alaina, and some different. I find myself thinking of them all the time. I read their journals and at some of the happiest times in my life, some of these families were experiencing much heartache. I embrace good times now, but I am more aware of the fact that, just because things are well in my world, doesn’t mean that is the case for others. Why do we have to experience such times in our lives? Why do children have to suffer? Why are parents faced with making such hard decisions on their children’s behalf? These are questions that flood my soul. I don’t have the answers, but I know who does. I have experienced first hand how and lingering heaviness can weigh on your heart, but at the same time joy unspeakable. The Lord gives Jeff and me what we need on a daily basis...not days, weeks, or months in advance but daily. This leads me to talk about our decision about what is to come for Alaina.

You all know how we have struggled with what decision to make regarding Alaina’s next course of treatment. We have read so many stories of other children, their course of treatment, their progress, their relapses, etc. that often times we would walk away more confused than ever. Even if we go through with the bone marrow transplants, this is no guarantee that she will not have a relapse. If we don’t have the transplants, this doesn’t mean that she won’t be healed of this awful cancer. Some children do fine without the transplants, others do not. What do we do? What will it take for us to know that our decision is GOD’s? These are the questions that have been hanging over our heads really from the beginning. We knew that these decisions were coming. The Lord has been good to show us each step as we should take it, sometimes just days before we have to give our answer. All this to say, sometimes the Lord doesn’t tell us with writing on the wall or in a huge way, many times it is a still, small voice. Right now, the only thing we know for sure is that she will be scheduled soon for the bone marrow harvest. In talking with Dr. Sande (the Dr. over the bone marrow unit), she stressed the importance of obtaining the harvest when Alaina is the healthiest. Right now is a wonderful time. We don’t know what the future holds, but IF she should relapse, getting a good harvest may have to be postponed.

We will be going to see Dr. Reddy (neuro oncologist), have an MRI, and meet with Dr. Sande (bone marrow Dr.) all next Wed., May 16th. Please continue to pray for everything to be CLEAR...NO SIGN OF CANCER!!! Also, continue to pray for God’s guidance as we make Alaina’s decisions for her. If they were decisions about our health, it wouldn’t be so hard, but this is our baby’s life.

As always, we love and appreciate all of you so much. Thank you for going through this trial with us and praying us through. May you all enjoy your families to the fullest and may every mother realize this weekend what a treasure we all hold in our children.

Jerri and Jeff

Thursday, May 3rd
Hello everyone!!! We are doing well. Alaina is having no problems at the current time...Thank the Lord! We can tell that she is feeling better because she doesn’t take anything off of anyone. If Alise or Trent cross her, she lets them have it. We have to discipline her just like we would the other two, and often times that is very hard. If we didn’t though, you better believe the other two would pick up on it.

We had a wonderful time this past weekend in Chattanooga. It felt really good to do something normal. Thank you to some wonderful friends who included us in their annual family/friend picnic and were so gracious to let us stay over night at their house.  We love you Shannon and Brian!!!

Thank you to Solitude Baptist Church, Rejeana Leeth, and many others from the Albertville/Boaz area who have organized a Benefit singing on Alaina’s behalf. It will be held this Saturday, May 5th, 6 p.m., at the Solitude Baptist Church in Albertville (off U.S. 431, behind Simmons Barbecue. They have several groups and individuals lined up to sing. The Cash Family, Autumn Brown, The Sexton Family, New Grace, and Rejeana Leeth. We are looking forward to a wonderful time of fellowship. If any of you are able to attend, we would love to see you there.

I can never begin to thank you all for all of the love and support which has been poured on us. I really feel badly that I haven’t been able to send thank you’s to you all, but please know that we thank you from the bottom of our hearts. So many things have touched our hearts in ways unimaginable. We are changed people. We will never be the same again. We have experienced the love of God through all of you...His People!! In a world where most of us are wrapped up in our own lives, busy, and find it hard to take time to feel the hurt of a family battling cancer....We have seen compassion, concern, and heartfelt sorrow from so many. It really helps to know that we are surrounded by so many wonderful people, holding us up in this battle. I’ll be honest in saying that many times I feel I just can’t go on. I begin to panic, thinking, how can this be happening to my sweet little girl. I want an end to all of this, but then realize that this may be something she deals with for a very long time. But, at just the right time, someone, somewhere does something, or says something, that reminds me of the God we serve and that He will carry me. When I worry about Alaina’s cancer returning, I am reminded that anything can happen to any of us at anytime. We should live each day as if it were our last. I know we have all heard this, but it has never really meant much to me until now. If any of you are reading this, and haven’t given your heart to Christ. Take the time to do so. You don’t know what tomorrow holds. Make sure that you will spend eternity with the one who loves you more than anyone possibly could...the one that died on the cross so that we may live an abundant life. Where we spend eternity is the absolute most important thing. What we have here on earth doesn’t matter. I love you all!!!!!
Jerri and Jeff


Thursday, April 26th
WE ARE FINISHED WITH RADIATION!!!! We want to say thank you to the staff at the Wallace Tumor Institute. They really are wonderful and treated Alaina like their own. We will miss seeing them all, but we are extremely excited that this phase of treatment is over for us. Dr. Fiveash, Alaina’s radiation oncologist, was very pleased with the way she breezed through the last 6 weeks. Thank you all for all the prayers said for Alaina!!! We had a clinic visit yesterday...blood work was good, she weighed 29 lbs., and Dr. Reddy had a wonderful smile on her face the entire time. She was very pleased with her progress. We give all the praise to God.

We are scheduled for another MRI on May 16th at 2:00 p.m., so start praying now. We want to hear...ALL IS CLEAR!!! They didn’t mention another spinal tap, so I’m assuming an MRI only this time. We are waiting to hear back about when the bone marrow harvest will be. We are still praying about the actually bone marrow rescue, but it does seem that most of the children diagnosed with ATRT have the bone marrow rescue following high dose chemo.

It feels very strange to not have any appointments until May 16th. We plan to go to Chattanooga this weekend...ALL 5 of us!!! It feels good to just be doing things as a family again.

Please continue to pray for Josh Musso, as well as other friends going through cancer treatments. We love you all!!!
Jerri and Jeff

Saturday, April 21st
Well, it’s 11:30 p.m. All the kids are in bed and I know that is where I should be, but it’s hard sometime for me to turn off everything in my head and go to sleep. It’s usually late at night when I read up on the other children and their families that are going through the ATRT battle, and update our website. There are several families I have been able to meet, through email, that are going through treatment like us. I think about these children constantly. This is such a hard and difficult battle, but these children are such fighters. The Lord gives them each something very special to be able to go through this aggressive treatment. If any of you are interested in following some of them, you can go to www.rhabdoidkids.com and find a list of these wonderful kids which will link you to some of their sites. Please pray for these kids and their families.

Those of you keeping up with Josh Musso. Please continue to pray for him and his family. He will be beginning this trial treatment around the 2nd week in May. Right now, he is home and recovering from his last surgery.

Alaina is doing fabulously!!!! We have so much to be thankful for. I really take time now to sit and watch the kids play. Watching Alaina running, smiling, and laughing with Trent and Alise gives me such a wonderful feeling. I am so thankful for all of my children and the joy that they bring to each day. For a long time after Alaina was diagnosed, it was hard for us to remember how it used to be. I would say to Jeff, “Can you remember what our lives were like before? He would stop for a minute and say, “You know, I really can’t”. But the last few weeks have helped us remember. We really have been functioning normally. We go to church as a family, we go to friends houses to have dinner and let the kids play together, we eat out, the kids play outside, and yes, we even have to break up arguments. It’s great, but sad to us too, that all this will soon change again when she has more chemo. (whether with bone marrow or just conventional chemo)

We only have 4 more radiation treatments!!! Alaina has started having some redness on the left side of her head. It appears that new hair is growing on the right side, but nothing on the left yet. Her eyelashes and eyebrows look great now, but they are darker than they were originally. It makes me wonder what her hair will look like. She will still be beautiful to us, even if it comes in green. ha!

Alaina hasn’t had any appetite stimulant for 4 days now and she is still eating very well, but a little more like you would expect a 2 year old to eat. She is starting to try different things now. She ate Mac N cheese tonight for the first time since chemo and she ate mandarin oranges yesterday. However, eggs, bacon, applesauce, chicken casserole, and milk continue to be her favorites. She has now caught up with Alise in weight. Yesterday, at radiation, she weighed 29.9 lbs!!! With a hat on, she looks like she used to.

We have a clinic appointment Wednesday of next week. We expect nothing but good news. I will probably not update again until after our appointment, unless something comes up between now and then. Hope you all are doing well and may the Lord bless you and your families. We love you!!!
Jerri and Jeff Atkins

Tuesday, April 17th
We have good news!!!! Alaina weighs 29.6 lbs and she looks like Alise’s twin again!!!! They told us we could stop giving her Megace (appetite stim.) and see how she does. We are thrilled. Now the only medicine she is taking is Bactrim (antibiotic) 3 days/week!!!! She is not having any problems or complications AT ALL!!!! THE LORD IS SO GOOD!!

She was able to play outside a little today before lunch and a nap. She loved it!!! She didn’t tire as quickly as she has been and she is getting much stronger. She is able to walk up hills, ride her tricycle, and even climb the ladder to the slide. We just praise the Lord for bringing her this far and look for Him to heal her completely. I have been very burdened the last few days. I love seeing her do so well, but it hurts to know that she has to go through more treatment. Sometimes I just don’t feel strong enough to watch her go through all of this, but at just the right time the Lord strengthens. In the past, I haven’t always shared with others my struggles or asked for prayer, but through this, it has been the prayer and strength of YOU (my brothers/sisters in Christ) that has held me up. I need the prayers and so does Jeff. The devil can really bring you down if you don’t watch out. Thank you all!!!!

We have been contacted by several others mothers of children, who have been diagnosed with ATRT, who are also doing very well in their treatment. This is VERY encouraging. Some of these children have had the high dose chemo (with stem cell/bone marrow rescue). I plan to contact some of them and talk with them about their experience with the high dose treatment. Maybe through some of them the Lord with show us what to do.

Another 8-9 treatments and radiation will be complete. I’m beginning to think Alaina will be disappointed. She really likes going. I have bitter/sweet feelings about her liking it so much. Today she wanted to stay with Anita (our “nite, nite” nurse). We are very appreciative of the staff at UAB and the Wallace Tumor Institute for the wonderful care they have provided. They really are good at what they do.

We hope that all of you are doing well. Hug your sweet families and remember to thank God for all the things He has done.
We love you,
Jerri and Jeff
 

Thursday, April 12th
All continues to be very well with the Atkins’!!!!! Tomorrow is visit number 19 with radiation. We are on the countdown!!! Alaina had a clinic visit yesterday with Dr. Reddy. (Jeff took her, so I’m just relaying to you what he told me). Dr. Reddy was very pleased with Alaina’s progress! Alaina weighed 27.9!!! She looks really good and she acts like she feels great. It really does us all good to see her this way. Jeff talked with Dr. Reddy about our concerns regarding bone marrow transplants and that it is just so hard to see how well she is doing now and think about bringing her down again with this very aggressive treatment. She was very understanding, but said that IF this tumor comes back it is usually very difficult to treat. She did say that there is no way to say definitely exactly what treatment each child with ATRT needs, but that it is so aggressive that they just hit it with everything. If the Lord leads us not to have bone marrow transplants, Dr. Reddy said she would want us to consider additional rounds of chemo like she has already had. We really do have huge decisions to make concerning Alaina’s treatment, PLEASE pray with us that the Lord will guide. Only He knows for sure what Alaina needs. It is so hard not having the answers to everything in advance, but sometimes God wants us to just wait on Him. We have given this to Him and trust that He will provide answers and peace that only come from Him. Jeff and I experience waves of emotions. It is so hard to explain how we feel. There are times we just sit quietly with each other, unable to express what we are thinking, times that we ask each other the “what if’s”, times that we are so tired that we don’t think we can go on, times that we laugh and play with the kids, times of frustration and unbelief, times of hope and excitement of what the Lord has brought us through, and of course times of doubt and fear. An experience like this causes you to experience every emotion possible at one time or another. Thank you all for helping us through this time. I know I say that alot, but it’s not just words, but heartfelt.

We love you,
Jerri and Jeff

Tuesday, April 10th
We have really had a good day. I think Alaina smiled and laughed more today than ever. She got to go to Papa and Gran’s (my mother and daddy) house this afternoon. She played on the swingset and then Papa took her for a ride on his John Deere!!!! She stayed over there while I went to the Dr. to get my iron checked. I have had problems with anemia and been unable to give, so I need to get it regulated before possible bone marrow transplants. We have been told that after her bone marrow harvesting, as well as during the transplants, she will need blood products. This evening we went to Grandmaw and Grandpaw’s (Jeff’s mother and dad) for supper and she and Alise and Trent played together outside. It was a fun, but busy day.

We were able to cut her appetite stimulant back to 1/2 ml 2x/day instead of 1ml 2x/day. She really is eating ALOT!! It’s so good to see her appetite pick up, but she eats so much that she has a hard time breathing after a meal. Then a couple of hours later, she is back at the refrigerator door wanting something else. Today for breakfast she ate 2 containers of applesauce, part of a blueberry pop-tart, and milk (in the car after radiation). We then went to Cracker Barrel (our usual stop) and she ate 1/2 of a biscuit with jelly/butter, 2 slices of bacon, 2 eggs, more applesauce, and 1/2 pint milk!!!! If I try to stop her before she is ready...she cries and begs for more. Today, at radiation, she weighed 28.5 lbs!!!! She has a clinic visit tomorrow, so maybe she can come off the stimulant.

Alaina is such a big girl at radiation. I am really pleased with the care she is receiving. Everyone is so kind and patient with her. Alaina, on the other hand, is NOT very patient with them. If she has to wait at all, she is not happy. She wants to go right back and go “Nite nite”. They all to a great job getting us in an out (usually within an hour). We are also usually met at the door by a Hand-in-Paw therapy team every morning. This is really a wonderful service. Alaina is usually not very friendly with the dogs until after she has been put to sleep, then she is a different child and enjoys holding their leash and walking them to our car. If you are interested you can visit their website at www.handinpaw.org  

I would like to ask for a specific prayer request regarding Alaina’s treatment. I know Jeff and I have mentioned before how nervous we are about the bone marrow transplants, and this is an ongoing concern. The risk is so great. Some of the children who undergo this treatment get really sick and even die due to infection. There have been children who have the transplants and overcome the brain tumor, but there have also been children who have not had the transplants and are survivors. We are really torn with what to do. We don’t want to “over kill” in treating the tumor, but we don’t want to risk the tumor coming back again either. This is where the Lord really has to make it clear to us what to do in Alaina’s specific case. Pray with us for guidance. We only have a few weeks before a decision will need to be made.

Thank you to everyone who is praying for Josh Musso. I talked with Anita today and the news is WONDERFUL!!! The last two days have really been encouraging to us all. He has not been experiencing the terrible headaches as he had prior to surgery, his confusion is much improved, his personality is more like the Josh they know, and today he even cooked breakfast!!! God is so good!!! Anita and I about had church over the phone!!! He is experiencing mild weakness on his right side, but this is also improving daily. He will be starting treatment in the next week or so. This treatment will involve the use of scorpion venom and has had promising results.....PRAY that Josh will be the BIG BREAKTHROUGH in this treatment!!!

Also, please pray for Kennis Nix, Taylor Hendrix, Summer Thompson, Kameron Lindsey, and Bayleigh Phillips and other friends we have made at Children’s hospital. These are some tough little fighters, but prayers are needed.

We love you all and thank you very much,
Jerri and Jeff

Friday, April 6th
WE ARE TUBE FREE!!!!! I just had to tell everyone. She has done wonderfully for 3 whole days with eating and drinking, so I called the Dr.’s office to see if we could remove the tube. Richard, the other nurse practitioner with Dr. Reddy said that Deborah (our Dietitician) said okay right away, but Dr. Reddy was just a little hesitant. Jeff and I feel in our hearts that this was definitely the right move. We are so excited!!! Trent is also very happy about it. He said the blessing tonight at supper and without any prompting thanked God that Alaina got her tube out and that she is feeling better. I love hearing him pray. He really is teaching us about child-like faith. Alaina is enjoying no tube too. She will point to her nose and say, “tube, gone gone”. And Alise, well, she is in her own little world and acts like she hasn’t even noticed it is gone yet. She is just content, no matter what....through the good and the bad. I love that about her!!!

As always, we love you all and thank you all for ministering to our family the way you have. Have a Wonderful Easter with your families!!!

In Christ,
Jerri and Jeff

Wednesday, April 4th
As I write this update, I am thrilled!!!! Alaina is doing fabulously!!! Every day, she is more and more like the Alaina we know and love!!! Thank you all so much for following her progress and cheering her on. At times, Jeff and I grow very weary and tired, but it is such an energy boost to see her sweet, precious smile and to watch her be a happy, playful 2 year old!!! You know, I have always been very thankful to God for my children, especially since I was told years ago that having children may not be a possibility for me due to medical problems. God is Wonderful and very Gracious as He hears our hearts cry and grants what the medical community says is impossible. But, being through what we have the last few months has really taught me alot about enjoying every day that the Lord has given us and to thank Him VERY often for the blessings He alone can give. Hug your loved ones, tell them you love them, and enjoy each other to the fullest. Life IS a vapor and we are definitely not promised tomorrow. We never dreamed that, we as parents, would witness our little 2 year old daughter facing these life threatening problems, but for some reason, this is the Lord’s will for our family and we continue to praise Him and Him ONLY for what He has brought us through. We are so blessed that He chose to put so many wonderful and dear people around us to hold us up. We love you all. I wish I could find the time and energy to thank each of you properly for all the thoughtfulness that has been poured on us, but please know that we appreciate everything more than you can imagine.

We are now coming to the end of our 3rd week of radiation and she is seeming to sail right through!! I have taken some video of how she has adapted to the radiation progress and should have that soon for everyone to see. It really is amazing how cooperative she is. The staff is GREAT with her and she really seems to like them, especially David, Anita, and Brooke (the “nite nite” people). After radiation is over, she is ready to chow. We usually head to Cracker Barrel in Trussville. She is really enjoying bacon, eggs, and biscuits with strawberry jelly (and of course applesauce is still and favorite). We have met some wonderful people at Cracker Barrel and they all have really taken an interest in Alaina.

I know I seem to be rambling, but I have so much on my mind. Thank you all for bearing with me. We got some excellent news today at clinic. Alaina weighs 25 lbs., 9 ozs. and everyone seems very pleased. Deborah, our dietician said to go a few days without feeds through her tube and see how she does!!!! PRAY THAT ALAINA CONTINUES TO EAT AND DRINK WELL!! She has to drink at least 24 ozs. a day to stay hydrated enough. She continues to take Megace (appetite stim.) 2x/day. The only other meds. she takes are Bactrim (antibiotic) and Zyrtec (for runny nose). She really has escaped any additional problems or complications.....Praise God!!

Please continue to pray for Trent and Alise. They are doing well and both are very happy and seem to be adapting well to our new lifestyle, but can still use the prayers of God’s people. We have gotten to do so much more as a family lately, which has been good for everyone, but if we do have to face the bone marrow transplants then we will all be split up again in the next few months. Jeff and I also need your prayers that we can provide some stability to each of our children and the time that each needs on an individual level.

Thank you all for praying for our friend, Josh Musso. He had his brain surgery this morning and is doing well. Anita (his mother) said he has had no complications so far, but they have told them to be watching for weakness on the right side and speech problems. Please pray he will not experience any complications!!! Also, he will be having an MRI tomorrow to see how much of the tumor was removed and the family should be talking to them in the next few days about the treatment plan. Please continue to pray.

I hope I get the opportunity to update again before Easter, but if not, we wish everyone a very happy Easter as we serve our risen Savior.

In Christ,
Jerri and Jeff

Saturday, March 31st
Alaina is doing very well. She is eating and drinking much more and she really acts like she is feeling better. Thank you for remembering her in your prayers. I also want to come to you all with another prayer request. A family that is very dear to us is also struggling with fighting a brain tumor. Josh Musso was diagnosed with a brain tumor about 4 years ago and this next week will be faced with another surgery in an attempt to remove as much of the tumor as possible. His mother and I have become very close friends and have discussed the specific prayer requests that the family would like for others to remember. The first being that once the surgeon gets in there, that he would be able to remove even more than he thought possible, and the second request, that following the surgery, Josh would not experience any complications and NO DEFICITS!!! I asked Anita (Josh’s mother) if she would mind if I shared this with all of you who have been so persistent in praying for Alaina. It has been the prayers of all of you that have brought us this far. Thank you for adding Josh to your prayer lists. Tuesday is when they will meet with the surgeon and a date will be set for the surgery. I will let everyone know more as I know more.
We Love and Appreciate you ALL,
Jerri and Jeff

Friday, March, 30th
Well, we have 9 radiation treatments behind us!!! We have an appointment every morning at the Wallace Tumor Institute in Birmingham at 7:00 a.m. We leave the house between 5:30-5:45a.m. Alaina really has adapted well. She is amazing to me. I get her up, put her in the car, turn on her favorite DVD (Kid Songs about Dogs), and she is content. When we get about three blocks away from where she receives treatment she begins to whine and say, “Nite Nite”. In the past couple of days, she has gone in and pointed to the room. When I ask her if she wants to go “Nite Nite”, she shakes her head yes and gets very excited. Today, she actually walked in the room by herself. Everyone who is involved in her treatment seems to be very impressed by her and how well she is handling everything. She did get a little sick the first few days and her appetite dropped a little, but since then she has done well. The Lord has really been with her through all her treatment so far and we believe that HE will continue. He is so good!!!!

Alaina had a clinic visit on Wednesday, at which time she weighed 25.5 lbs!!!! Everyone was thrilled. The Dietician/Nutritionist decreased the time we feed her through the feeding tube to 8 hrs./day instead of 16. Now, she and I can sleep through the night. (I was having to start her feeding right after radiation and turn it off around 1:00 a.m.) Her blood work was perfect, and Dr. Reddy seemed to be pleased with how well she is doing. We have to go to clinic every week for weight checks, but we see her oncologist every 2 weeks now. I asked Dr. Reddy Wednesday when the next MRI would be scheduled and she said that Alaina wouldn’t have another one until radiation was complete. So, for now we continue with radiation for 4 more weeks, and then they will schedule bone marrow harvesting and her next MRI before the bone marrow transplants begin. I ask everyone to PLEASE pray that Jeff and I will know without a doubt that she should go through the transplants. Out of everything that we’ve gone through, this is by far the scariest and it sounds like the most risky for Alaina.

The past few days Alaina is more like the way she used to be. Smiling, playing, loving the outdoors, etc. And we love watching her eat!!!!! She is beginning to venture out a bit at mealtime, but consistent favorites are cheeseburgers from McDonald’s and my meatloaf. We have seen an increase in her eating and drinking since the decrease in the feeding through the tube, which is WONDERFUL. She is also getting those famous chubby cheeks back!!!

Trent and Alise are great!!! They really have been a blessing through all of this too. Alise is always so happy, which is such an encouragement to Jeff and me, and Trent’s prayers...Wow, what faith. He really asks the Lord for things...Believing. He really does protect Alaina and will quickly tell other children about her feeding tube and that they can’t pull on it. He loves Alise too, but the two of them can really get into it sometimes. If anyone else messes with her, he is quick to the rescue. We have been blessed with our three children...All different, but All Wonderful!!!!

Thank you all for loving us and loving our children. It is very hard to go through this kind of trial, but it would be unbearable without friends like you!!! This is to the friends we know well, and also to those that we have only met through email and cards...THANK YOU from the depths of my soul. Please continue to pray for Alaina’s strength, endurance, appetite, and COMPLETE healing!!!!
Your Sister and Brother in Christ,
Jerri and Jeff


March 25th 2007
Thanks everyone for taking the time to read the update today. We have had a great day!!!! We all went to church (in the same vehicle) for the first time in forever. Alaina is doing great!!!! She has gained 2 pounds since the feeding tube has been placed and is eating very well. Today we went to Cracker Barrel and she ate green beans, apple sauce, and mashed potatoes. She was asking for meatloaf, but theirs was not as good as mama’s world famous recipe. Overall, the last few days have been almost normal. Whatever normal is. It is very hard to remember what it was like before this happened. The hardest part is trying to remember her. She is not the same child. She was once our “Little Fireball”, now she is very sweet and humble. She still worries about her brother and sister wanting to know where they are and if they have milk when she does. Thing that used to bore her now entertain her. Alise and Alaina both love to watch the Kid’s Songs DVD about dogs. This would not have happened 6 months ago. Maybe they are both changing and we are to occupied with other things to realize it. Alaina now loves animals. Before she would not get close to a dog or cat. Now she loves for any dog to lick her hand or let her pet them. We go back in the morning to start our 2nd week of radiation. The first week went off with very little side effects. Alaina became a little nauseated on Thursday, but other than that and being sleepy she has done great.

The biggest challenge is trying to get everyone up and going at 5 o’clock. She has to be in Birmingham at 7 o’clock so we have to leave by 5:30. I am already at work at this time so this is another burden that Jerri has to bear. I know she is so tired and mentally exhausted that she is about to break. Please pray that she will have the strength to continue. Family and friends have really been a great help to us. It is hard to express our love and gratitude to each of you. Maybe when all of this is behind us and our lives are restored, we can repay you in a more tangible way. Until then, Thank You Very Much.

Also Kenis, one of our new friends, her family is about to face some important decisions. Her web sight can be found on our links page. Please pray that they will make the right ones. I have come to realize that I can not change the will of God. I can only pray that He gives us the strength to make it through. Life is not always fair, and we may never know why these things happen this side of Heaven. But still we press on. Giving glory and honor to His name.

Jeff and Jerri.
 

Thursday, March 15th
We apologize for being several days updating, but to be totally honest, Jeff and I are exhausted. We have times that everything catches up with us, then we refuel and we’re good to go again.

Let’s see, since we updated last, a few things have happened. All weekend Alaina was very sick…vomiting and a very poor appetite (even with the stimulant). We were told that the tube was placed into the intestines, so if she were to get sick and vomit, the nutrients that she received would not be lost. Needless to say, that when she began vomiting the formula from the tube feeding, we all thought that the tube was out of place. Allison, our nurse practitioner, scheduled an appointment for us to check the tube placement on Tues. (two days ago). We were to be there at 7:45 a.m. Alaina, at this time, was extremely weak because she hadn’t kept much down since the placement of the tube on Thurs. of last week (5 days prior). X-rays showed that the tube was in perfect placement. So, all they could conclude was that, for some reason, the formula was backing up in her stomach. Because she had been so sick, Alaina was very dehydrated and required 6 hrs. of I.V. fluids. While we were receiving fluids, the nutritionist came to talk with me and discuss our plan. In the course of talking, I showed her by notes of what had been done over the past 5 days. She immediately pointed to my notes and said, “That’s the whole problem right there.” She said the rate that the formula was given to Alaina had been progressed too fast. I had her plan of care in my notebook and I had done exactly what she had said. She automatically began apologizing, and said it was her fault. She had written for the rate to be increased 5 ml every hour and it should have been increased only 5 ml every 8 hours. There was no wonder now why the formula was backing up into her little stomach. I was just sick at my stomach knowing that what I had been doing for her the last 5 days, thinking I was helping, was actually what was making her sick. I really had to choose my words carefully for the rest of our conversation. I know she didn’t do it on purpose, but speaking as Alaina’s mother….I was furious. Now that all of that is behind us, and we are giving her the correct amount at the correct rate, Alaina is MUCH better. She is not getting sick. Her appetite is picking up every day, and she is acting more like the old Alaina. Trying to look on the positive side of things, we are very thankful that the problem was found relatively early, and she had not lost any more weight. She still weighed 22 lbs, so that is a blessing.

If her appetite continues to progress as it has the past couple of days, we know that she will have gained weight by next Wed. (we have to return for weight check). Today, for lunch she ate 1 ½ cheeseburgers from McDonald’s!!!! WOW, that Megace (appetite stimulate) really works!!!!

If everything goes as planned, radiation should begin Monday of next week. I know this is the best course of treatment for her, but I really hate the thought of radiation, but with every phase of her treatment comes anxiety, and yes even fear. It is really hard for us to see the changes all of this has had on her. I just cling to the thought of all the prayers that everyone is sending for her. I do find strength in all of you. I really have learned how other brothers and sisters in Christ can help carry you through the hard times in life. If any of you do not have a church home, I urge you to find one. (Our church, Dwight Baptist, always has its door open) If you haven’t had to rely on the prayers and encouragement of others, you will. Not to sound gloomy or anything, but it is not a matter of IF we will face hard times, but WHEN. I love you all very much and as always, remember….Our God is Good, ALL of the time!!!

With sincere love and appreciation,
Jeff and Jerri

Sunday, March 11th
Hello everyone!!! We have had a couple of beautiful days and have enjoyed playing outside with the kids. Jeff and I felt like we were a normal family. It was a wonderful feeling….no Dr.’s, blood work, tests, shots, etc. Yesterday, we even went to the park. Alaina wanted to do everything…slide, swing, etc. We can really tell that she is still very weak and she tires very easily, but it was great to see several smiles throughout the day. We miss how happy she used to be.

We need all of you prayer warriors to continue to pray for her appetite. We really expected her appetite to be much better by now, but this continues to be a big challenge. Right now, all we can get her to attempt to eat is creamed potatoes and applesauce. She used to love milk, but now that doesn’t seem to be something she wants.

As always, we appreciate you all, and hope all of your families are well. As we know more about radiation we will let everyone now, but as for now…We have no set appointment.

With Christian Love,
Jerri and Jeff

Friday, March 9th
We have our feeding tube now. It is called a TP (Transpyloric) tube. It goes in her nose, down through her stomach and into her intestines. A large amount of the tube is seen outside her nose. We tape it to the side of her face and pin it to the back of her shirt to keep it from coming out, or better yet, from someone pulling it out. The tube was placed yesterday morning. I was actually able to stay with her during the procedure. What an angel she was!! She was lying on the table and between gagging, she would call “Mama” and look to be sure I was there. I had to keep telling myself that this was what she needed to get the nutrition she needs. When the procedure was over she said, “Yea” and clapped her hands. She could have been no better. Gran was with us, and we were getting Alaina dressed when she got sick and the tube came out. You guessed it, they called the Dr. back in and he had to place the tube all over again. So far this tube has given us no problems and Alise and Trent, as well as Alaina have left it alone!!!! Alaina has to be feed 16 hrs./day. We are doing most of the feeding during her sleep, so she’s not got a pole following her all day.

Alaina is extremely weak and tires very easily. Yesterday, I took the girls outside to play and Alise was running circles around Alaina. Alaina has trouble transferring from sitting to standing and stepping up is hard without assistance. We really have to watch her while around the other kids, because just the slightest push/bump causes her to lose her balance.

Her eating continues to be a major concern. She just doesn’t really act interested in food, however she will try creamed potatoes and today that is all she has eaten. They changed her appetite stimulant to Megace which is steroid based, so maybe that will start kicking in soon. She was also prescribed Zyrtec to assist with the drainage she continues to have.

Trent and Alise are very sweet with Alaina. It is as if they both understand that she is going through a really hard time now. Alise wants to help Alaina so bad, but Alaina will have no part of it. If Alaina’s nose is running, Alise goes for a tissue and tries to wipe Alaina’s nose, she will often come over to Alaina and pat her or rub her leg or lay her head in Alaina’s lap. It is just precious, but Alaina isn’t feeling the love right now. Trent readily shares with Alaina and often asks her to play in his room. Last night he even wanted her to sleep in his bed with him. And I have to add that Trent prays the most heartfelt prayers for Alaina to get better. He seems to be learning better how to talk to God. I draw strength from hearing him pray. He asks BELIEVING!!! It is a reminder of how we should all pray. I am guilty of letting doubt and fear set in. When I start looking at statistics and “what ifs”, I find that is when I feel my world crashing in, but when I focus on the ALL POWERFUL God that can do ANYTHING and cure ANY disease, I feel calm and peaceful. We all go through tough times and I’m sure many of you are in the middle of a storm yourself. Although hard at times, remember God is there and HE wants to give us all peace and hope.
With Love,
Jerri and Jeff

March 7th 2007

Well, what a vacation week. This week I took a vacation week to possibly have a little family time. Yeah right! Monday we had a doctor’s appointment in Gadsden to check blood levels. Tuesday we made a trip to Birmingham to the UAB Tumor Research facility to simulate radiation. That went very well. The team that is working with us is great. Later that afternoon, I had an eye doctor appointment. Wednesday, we came back to the clinic at Children’s in Birmingham. We had an MRI and a Spinal Tap to check the progress. EVERYTHING IS STILL CLEAR, WITH NO SIGNS OF GROWTH!!!! So we have reason to rejoice. Also, along with the good comes a little bad. We are going to have to have a feeding tube put in. The tube will go in the nose and down into the top part of her intestine. This is to make sure that if she is nauseated, the nutrition will not come up too. I am not very enthused about this. I really felt like she would recover on her own, but she is not. She just won’t eat enough. I understand this process has to happen, but the thought of a feeding tube in my daughter’s nose is very difficult for me. Jerri, on the other hand is encouraged by the placement of a feeding tube. She is happy to know that they are putting good things into her body instead of the poison of chemo. Alaina now weighs 22 lbs. and going into radiation and bone marrow transplants with poor nutrition would hinder her progress. We are scheduled to return to CH in the morning at 9:00 for this procedure. They said it would be very quick and that they would use a fluoroscope to ensure proper placement. Alaina will not be put to sleep, so she will not like this, but it only takes a few seconds to complete.

Some additional good news today is that Alaina’s blood counts are coming up on their own. She needed no blood products and we were told to stop giving her the Leukine shots!!!!!

Jerri and I talked with Dr. Sande (Bone Marrow/Stem Cell Dr.). Initially, the plan was to harvest bone marrow before radiation began, however since they have decided to radiate only the tumor bed, and not include the spine, her bone marrow will not be effected. So, they have agreed to wait until post radiation to harvest. This is good for us, because now Alaina will have time to recover and be in better health before this procedure!!

We should know tomorrow when radiation will begin, but it’s looking like Monday of next week.

PRAYER IS POWERFUL……WE ARE SEEING PRAYERS ANSWERED DAILY….SOMETIMES NOT THE WAY WE WOULD LIKE….BUT GOD KNOWS BEST!!!! WE LOVE YOU ALL AND CHERISH YOUR PRAYER AND SUPPORT!!!

Jeff and Jerri


Tuesday, March 6th
I hope everyone has enjoyed this beautiful day as much as we have!!! It was warm enough that we took Alaina outside to swing and play after we got home from B’ham. We had an 8:00 a.m. appointment at the Wallace Tumor Institute for radiation simulation. It went very smoothly and we were out the door after only 1 hour!!!! That usually doesn’t happen. We are usually in the waiting room at least that long for any appointment. Everyone was GREAT with Alaina. We were able to stay with her until she was asleep, then we waited in the waiting room until they were finished with her. All they did today was a CT scan of her brain which would be used to make a plan of how much radiation would be needed and to plan out her course of treatment, as well as a mask which will be used to assure that the radiation will be administered in the exact spot every time. It has been decided that ONLY the tumor bed will be radiated!!! We are very excited that they opted not to involve whole brain and spinal radiation. Of course, the more areas you radiate, the more side effects possible. We don’t know yet exactly when radiation will begin, but we should very soon. It could be as soon as Monday, but it is our understanding that bone marrow harvesting will take place before radiation begins.

We go tomorrow for a follow-up visit with Dr. Reddy (Alaina’s oncologist), at which time they will draw more blood to check her counts. We went to Gadsden Pediatric Clinic yesterday and her WBC was on the rise!!!! Her platelets and RBC continued to be low, but not necessary at that point to transfuse. If she needs blood products tomorrow, we will be there most of the day. The most important thing for you all to remember in prayer is that tomorrow we also have another MRI and a spinal tap. She will be having monthly MRI’s for a while and then they will taper off. The spinal tap is just to make sure that no cancer cells are in her spinal fluid. Our Dr.’s appt. is 9:00, but the MRI/spinal tap isn’t scheduled until 12:00. PLEASE be in prayer with us during this time that we will be given more wonderful news.

Alaina’s appetite continues to be very poor. She does seem to be drinking a little better, but it is VERY hard to find things that she will attempt to even open her mouth for. When she was weighed yesterday, she had lost another pound and now weighs 23 lbs. Pray for a consistent increase in appetite SOON!! (she is still taking a stimulant).

We love and appreciate you all. It warms our hearts at the outpouring of love shown to our little girl, as well as our family as a whole!!

Jerri and Jeff

Friday, March 2nd
WE’RE HOME!!!! We’ve been home since Wednesday around 6 p.m. Alaina wouldn’t eat anything initially, and getting her to drink was a challenge. She has been taking an appetite stimulant since Wed. and today we began seeing a change in her eating!!! Thank the Lord! She actually ate an entire turkey sandwich for lunch today!! Please continue to pray that her appetite will continue to pick up.

The first thing we need to tell everyone, is that we took Alaina to The Gadsden Pediatric Clinic today to be weighed and have a complete blood count drawn. Her platelets were low, as well as her white blood cells. They expect that the first of next week she will require platelets and whole blood. Either Jeff or I will be going to Birmingham tomorrow to give platelets. We still have 1 ½ units of whole blood banked for her at Children’s. Please pray that as her counts are very low, she won’t get a fever or infection. On a good note, she now weighs 24 lbs., which is only 3 lbs. away from what she weighed when this all began!!!!

Jeff and I have been excited that he was going to be off of work next week and were hopeful that we could spend some much needed family time with the kids. We intend to make time for that, but our schedule is rapidly being filled with appointments. Tuesday we have an appointment with the radiation oncologist (Dr. Fiveash), as they will do the simulation in preparation to begin soon. We will know more after Tuesday as to when radiation will begin and exactly what areas they want to radiate. Sometimes, it is necessary to radiate the whole brain and the spine, however, please be in prayer with us that it will only be necessary to radiate the tumor bed. Also, an additional request is that you pray for good results on Wednesday, as we will have another MRI and possibly a spinal tap.

Thank you all for your continued love and support.
Jerri and Jeff

February 27, 2007

Hi everyone, Jerri and I would like to say thank you for praying and thinking about us this week. We are still at Children’s Hospital and will be here until Alaina’s white blood cell count comes up. I will spend the night tonight and hopefully take some of the burden off of Jerri. She has been here since Sunday and Alaina has come a long way since then. She has received all of our directed donor platelets and had no reaction to them. There is something going on though, her white blood count is lower today than yesterday. This is very unusual because of the platelets she has been receiving. The nurse called the doctor about it and we have not received a response. SHE LOOKS GREAT. She has also been eating blueberries and syrup. That doesn’t do much for me but I’ll take whatever right now. She has been receiving TPN in her central line as well as Lipids. This has made her feel so much better. We have been mixing some powder in her milk that boosts the calories and fat content to help her regain some weight. The Lipids and TPN are not enough alone, she needs to eat on her own. Please continue to pray for this, the next step if she does not eat properly is to place a feeding tube in her. I just can’t bear the thought of my baby on a feeding tube. Of course we want the best treatment for her but, we are praying that this will not have to happen.

Jerri and I have a meeting with the stem cell doctor and Alaina’s oncologist. We want to discuss the stem cell issue with all of us in the same room. I don’t know what time yet so I can’t ask you to pray at that time.

I am off all week next week. Maybe Jerri can get some rest. I hope we can do a few things as a family. Many times I have wandered what did I do with all of my time? It is so hard to remember what it was like before this started. It is amazing to walk these halls and see the mighty little warriors battling their giants. Some people find it hard to look at a sick child, or see the scars that are sometimes left behind. But I find it very interesting. Most of them (or their parents) are eager to talk about our experience or theirs. Some of them find it to be a relief that they can talk about it and get it off their mind. Jerri and I are very blessed that Alaina has done so well this far. There have been bumps in the road, but we continue on anyway. I have often times wondered what it would be like if there were unlimited funds available to use for her care. Could we have gotten better care? Would we have made better decisions? Then reality sets in and I remember that if we just follow the plan that the Lord has set before us, it will be hard to go wrong. And as far as the funds go, He has provided for every need. The Lord has confirmed with us that we are in the best place to receive the best quality of care. We are blessed that Dr. Alyssa Reddy is in Birmingham, because she is The Expert on ATRT tumors!!!!!
We Love You All,
Jeff and Jerri

Monday, February 26,2007
Well, I returned to the hospital last night after a couple of nights of much needed rest. It felt really strange leaving Alaina. This was the first time since her diagnosis that I hadn’t been with her, but I really enjoyed spending time with Alise and Trent. I have felt very torn over the past few months…needing to be here with Alaina, but feeling that I’m missing out on what is going on with Trent and Alise. We have been very blessed to have very special friends willing to care for them in mine and Jeff’s absence…Thank you! What a blessing you all have been to me and Jeff!!!!!

Alaina is a different child from when I left on Friday night. She is much more energetic, her color looks great, and she acts like she is feeling better (We are walking the halls again!!!). Since Thursday, she has received platelets x 3, red blood x1, and has been getting IV nutrition continually since Friday night. Because she began running a fever, they started her on antibiotics Friday morning. She has also been acting as if her stomach was hurting from time to time, so they began Zantac. Really, the only thing keeping us in the hospital now is that her counts are so low. Her white blood count currently, is around 110, normal is somewhere around 10,000. So, needless to say, we are at very high risk for infection. She hasn’t had a fever for a couple of days now, so the Dr. said this morning that as soon as her counts appeared to be on their way up that we could go home. If her appetite hasn’t picked up, we will probably continue the IV nutrition at home, as a supplement to her normal meals, so she can keep her weight at a more healthy level. Hopefully, once home, we won’t be admitted again until time to harvest her bone marrow. When we begin radiation, it will be on an out-pt. basis, so maybe our family can function more normally for a while.

I would like to take time to speak from my heart. I know Jeff and I have said before how much we appreciate all that everyone has done for us, but I really need to say it again….THANK YOU ALL!!!! God is so good, and knows what we need and the time at which we need it. It is true that God walks through the storm with His children, but He knows that sometimes we need encouragement in the flesh…that’s where YOU (our brothers and sisters in Christ) come into play. If it weren’t for all of your prayers, cards, phone calls, financial support, wonderful home cooked meals, willingness to keep our children, and encouraging words, we would have fallen apart long ago. We have experienced God’s presence through each of your actions…..Thank you for ministering to our family. I have been overwhelmed by God’s love expressed through His children, even those whom we have never met!!!! We love you all and may God truly bless each of you for your unselfish and giving spirit. Through the bond that has developed, and the heart felt prayers offered for Alaina, I really do believe that we are all going to witness the Might and Power of our wonderful Lord and Savior, Jesus Christ, as HE continues to heal her of this terrible cancer!!!!
In Christian Love,
Jerri and Jeff

February 23, 2007

Well allot has happened since Tuesday. Alaina and I came to Children’s on Wednesday to get a shot of vincristine. We also had to have a red blood transfusion. While we were there, we also received fluids. The Dietician came to talk with me about Alaina’s weight. We knew this was going to be an issue eventually. She has done outstanding so far but, this last round of chemo really hit her hard. She has not eaten anything solid to speak of since Sunday. I was able to get 6-7- bites of Mama’s world famous chicken casserole down her on Thursday evening but that was all. We called the nurse to ask about admitting her and start her on fluids to help get her appetite back. She agreed. Jerri and Alaina came back to Birmingham that night. I am here with Alaina now until Sunday. Jerri has strict orders to SLEEP as much as she can. Jerri has been an inspiration to me in that she can keep going even when the rest of us have to stop. Even when she is home, she has to take on a whole new set of responsibilities. At home when I am at work, she has the household responsibilities as well as taking care of two very energetic children. Oh yeah, we can’t forget about Alaina who demands an enormous amount of attention.

I also spoke with the Stem Cell team about the next step in treatment. As some of you have already heard, there is a little confusion about this procedure. The way it was explained to me on Wednesday makes much more sense than earlier explanations. I understand now, the whole reason they want to use this in the protocol. The reason is to expose the patient to as much chemo as possible, and the patient survive. The high dose chemo would be much greater than what she has seen so far. This is to ensure the tumor cells, if there any still there, are killed. After the high dose chemo, the patient needs lots of help to bring their immune system back to normal. This is where the bone marrow or stem cells do their job. Without the transplant to rescue the patient, they would not be able to recover on their own.

Our original thought was since we now know that Alise is a 10 point match for Alaina, we would use her bone marrow. Well, that is not going to happen. There seems to be some ethical problems with this. The stem cell doctor has some issues with this because there is no medical data on this what so ever. According to her, there is no medical reason to use Alise as the primary source of bone marrow. Even though Alise has never been exposed to any of the things Alaina has, and her marrow would be healthier. According to her, Alaina still needs her own. She does not have an issue with using Alise as an emergency back-up. This would have been nice to know before we had Alise typed to verify that she was identical. They reassured us that they were not being misleading, but we see this procedure in a whole new light.

Alaina is resting now and she will be given nutrition in her IV for a couple of nights. We have to get her energy level and her weight up. She is down to 20 pounds. That is too low. This will be like a kick start to get her eating again. I pray we have the nausea under control. She has been given many types of medication today and I am glad to see her peaceful. I know this was a long entry. Thank you for taking the time to read all of it. Please pray that she will begin eating and can keep it down. We love you all, Jeff and Jerri.
 

Feb. 20th 2007

Hi everyone, this week has been a blur. Jerri and I have had to sit back and enjoy our children this week. Alaina and Jerri came home on Friday and we had a really good weekend. The last treatment of chemo is over and it has proved to be the hardest for her. She has had lots of nausea and does not want to eat anything. What she does get down usually comes back up. We are doing all that we can to keep her hydrated. Monday we went to her pediatrician to have her blood counts checked. Her white blood cells are very low and by Wednesday she will probably have to have another blood and platelet transfusion.

Today, we went to meet with the radiation doctor at UAB. Some of you may be wondering why UAB? After Mass. General in Boston reviewed our case, they came to the conclusion that UAB could give the same level of care that they could. The oncology department at Mass. General feels like we are in the very best place for her to receive world class treatment. We were reassured by their team that Alaina’s doctor at Children’s is the foremost authority on ATRT. They felt like their plan of action would be the same as Dr. Reddy’s. We were also not a candidate for the proton therapy. Alaina has received a very high dose of methatrexate, this is not something that goes well with proton therapy. All of that to say, it looks like an extended out of state stay will not be necessary. This is a bitter sweet response. We felt so strongly that we needed to go to Boston. But the burden of moving for two months has been lifted. We also found out today the results of Alise’s blood typing. She is a perfect 10 point match. We had them tested when they were born and they said they were identical. This just confirmed this. So, when we need her bone marrow transplant we have a perfect match.

We go back on Wednesday for a s hot of Vincristine and I am sure another transfusion. Jerri also has a continuing education course in Birmingham so we will be split up for the day. Also, Jerri has to be back in B’ham on Thursday to give Platelets. I gave mine on Monday and it was not the most pleasant experience. Since Jerri and I are the only ones that can give directly to her, we have tried to time our donations to meet her needs.

Our current prayer needs are that we will make the right decisions about radiation. Also, about bone marrow transplant. The protocol calls for the transplant, but we are not sold on the idea. We need an uncanny understanding of her situation. Our prayer is that the Lord will guide us and her medical team as well. We feel like the radiation is only needed in the tumor bed, but they have said it may be necessary to radiate her spine as well. There are many side effects of doing this. Please pray that this will not be needed. We love all of you very much, Jeff and Jerri.

February 12, 2007

What in incredible night!!!  Thursday Feb. 8th was a huge success.  The benefit concert was more than I could have imagined.  I knew that the Lord’s will was for us to have this event, but I had no idea He would bless the efforts of His people in this way.  By just following His voice and  moving through the doors He was opening, we were able to raise three times the amount we were praying for.  PRAISE THE LORD!!!  To see our church full was almost overwhelming.  I did not know how I could make it through the part I had in the event.  Then that small voice that I have come to know so well of late says to me “I will carry you”.  And He did.  I would like to say a special Thank You to all of the Choir members, soloist, Gordon Mote, and all of the behind the scenes people that made this a special evening.  There are a lot of unsung heroes like ushers, nursery workers, and office staff.  Jerri and I love all of you. 

Alaina is doing great!!!  We returned Friday to Children’s for her last and final round of chemo.  She only received fluids on Friday and the Methatrexate began on Saturday.  The rest of the week will be the same protocol as the last two.  She went today for her hearing test.  They repeat the test every time she is admitted for chemo because one of the drugs she is given (Cisplatin) has a history of causing hearing loss.  She passed with a normal hearing level for her age.  This is another praise report since hearing loss is frequent with chemo patients.  Speech Therapist are also working with her to asses her speech levels.  Jerri and I have been concerned with both of the girls speech levels for quite some time.  Even before this happened with Alaina.  Trent was talking in full sentences by the time he was 18 months.  Needles to say the bar was set pretty high for the twins.  Speech Therapy has not given us much feedback yet but when they do, we will post it. 

An appointment has been set for February 20th with the radiation oncology team at UAB.  We don’t know all of the details, so please pray that we will make the right decision concerning radiation.  Our next MRI will be on March 7th.  Alaina will have many MRI’s throughout her life to monitor the area where the tumor was.  Although we believe it is gone for good, Jerri and I need to keep seeing there is nothing there that is not supposed to be there.  Please keep us in your prayers as we continue our fight.  Just as David had five stones in his pouch, one for Goliath and the others for his four brothers.  We have four more stones and we will fight the battles as they come.  We love all of you very much,  Jeff and Jerri.

Thursday, Feb. 1, 2007

Let’s celebrate!!!! Alaina had her MRI today and the results were negative, “perfectly clear” there were some areas of concern from the last MRI; but, even those have disappeared completely. The empty space that was left after the tumor was removed has begun to be filled in by her brain. It is making adjustments to move back into the position it is suppose to be in. And the doctors and nurses were very ecstatic about this news. They consider it a medical victory, but we consider it a praise report.

This morning at breakfast, Gran asked Trent if he would say the blessing, he said he would. Gran asked if he would pray for Alaina to be healed, he said he wouldn’t pray to heal Alaina, because God had already healed Alaina.

We cannot express how excited we are that this is clear. If anything was going to grow, there would have been signs of it by now. So we are elated at this wonderful news!!

We are really looking forward to this Thursday night as a time of celebration and we hope to see everybody there. 

Jeff and Jerri

Thursday, Feb. 1, 2007

We are all enjoying the 5 of us being under the same roof. Alise and Trent were exposed to Type B Flu, so our pediatrician suggested we keep them away from Alaina for 5 days just to be safe. They came home tonight!!!!! Jeff and I had not seen them since last Fri. It was hard, but we had to think about Alaina. Trent was very understanding and seems to have matured alot in the last couple of weeks. Thanks to everyone for praying for him. We believe God is answering prayers and helping him to be more content. This is hard for all of us and I believe it had more of an effect on Trent than we thought. Alise has never missed a beat and is very content and happy!!! Alaina has really enjoyed playing with them and Jeff and I have enjoyed seeing the three of them laugh and have fun....what kids should be doing.

Thanks to everyone for the cards and emails. We feel terrible that we haven’t been able to respond to them all, but PLEASE know how uplifting they have all been!!!! We will be telling everyone for years to come how blessed we have been through the kind words, the gifts, the meals, and most of all the prayers you all have lifted up for our entire family. We have felt a strength that has been truly unexplainable. It is not of this world...but of God. WE LOVE YOU ALL!!!!

We are very excited about the concert that our wonderful church is organizing for Alaina this Thurs., Feb. 8th. We are ready for a night of relaxation and celebration. We can’t wait to see friends and family that we haven’t seen in weeks and even months. As you all know, we have another MRI scheduled for Wed., so we are hopeful that we will be announcing some very good news at the concert. We are also very hopeful that Alaina will be with us at the concert. She may just have to make an appearance and then leave. We have been told to continue to be careful about her being around alot of people because any sickness could really set her back. Information about the concert can be downloaded from the website.

We had another appointment at Children’s Hospital yesterday. Alaina underwent neuropyschological testing, which she scored age appropriately!!!! She also was seen by her oncologist (Dr. Reddy) and received a good report. And since all that happened this past weekend, we also met with Dr. Sande, who is over her stem cell/bone marrow treatment. At this point, any transplants Alaina receives will be bone marrow transplants instead of stem cell transplants. They are going to test Alise next Wed. to make sure she is truly her identical twin. If she is, we will more than likely use her bone marrow for Alaina, because hers would be healthier since she hasn’t received chemo.

I am sorry once again that my updates have been so lengthy. Thank you all for continued prayer. That is the only thing that keeps us standing!!!
Jeff and Jerri

Sunday, January 28th

Where to begin? This weekend was by far the most difficult and challenging thus far. We arrived at Children’s hospital on Fri., 7:30 am. We were admitted into the Stem Cell Unit afterwards Alaina was taken to have the catheter placed in her groin. This was the easiest part of the whole weekend. It went downhill from here.

Alaina’s platelet count was too low, so they had to give her some before they could start the harvesting process. They pre-medicate with Tylenol and benadryl prior to starting. Usually, a child will rest during most of the process, however, once again Alaina is unique. They proceeded to give her Adivan to make her relax, this only aroused her more. An additional dose of Adivan was given only to find her still awake and VERY unhappy and hyper. While they discussed what could be given next, Jeff and I were left to struggle to keep her still and from pulling her catheter and central line out. Approximately, one hour into the process, the catheter in her groin had clotted. Several nurses attempted to unclog the lines. They would flush, but they would not return. Everyone was frustrated by this point, ESPECIALLY Alaina. In an attempt to calm her, she was given Morphine. Guess what? Morphine doesn’t put her to sleep either. By now, it was decided that they would not attempt to use the newly placed catheter. So, the only alternative was to use the central line. We were told before hand that the central line sometimes was unsuccessful in harvesting, but that the catheter in her groin would be larger and more capable of harvesting, so needless to say we were nervous about damaging the central line. They felt sure it wouldn’t damage the line, but said harvesting would take much longer. By now, it was around 2 p.m. and nothing had been harvested. The use of the central line was successful and things were going well. About 4:00 p.m. Jeff was told that the best time to harvest the most cells had pasted. They were going to continue until 6:30-7:00 p.m and then quit for the day. The plan was to come back the next morning and begin again. Alaina continued to be very wild from all of the medication given. She was climbing, struggling with me, crying, pulling at her lines, etc. She had been this way now for approximately 12 hrs.!!!! When she was successful in climbing over the top of the bed, they decided to bring a bed with a top on it. She was given another dose of Morphine and FINALLY went to sleep at 11:30 p.m.

We really didn’t think things could worsen, BUT they did. She slept well until around 8:00 a.m, when they gave her more platelets to begin harvesting again. During her nap, around 10:00 a.m, they began harvesting. All was going well, we were all excited that there was a possibility that she would sleep through most of today’s process. The nurse was checking vital signs, the machine was turned on and had been running about 2 mins., when Alaina sat up in bed and began coughing. I went to her to see if I could get her back to sleep, when the nurse and I noticed her lips had turned blue. The nurse went to get the Dr. and I stayed with Alaina. While she was out of the room, I noticed Alaina’s breathing became very labored and shallow. I ran to tell them and everyone came running. At this time, I was alone because Jeff had to work, my parents had gone to get my lunch, and Jeff’s parents also were working. As all of this took place, the Lord sent Steve Trader, our pastor through the door. (The Lord is good). I immediately called Jeff and told him to stop where ever he was a come to the hospital. He was on his way. It was as if time stood still. I couldn’t believe what I was seeing. Everything was running through my head and I was wondering where things went wrong. She has had no life threatening complications so far....was it her heart?....had the chemo just caught up with her?.....was this where the Lord was going to end her journey?.... They were giving her oxygen, then they said, “It’s okay Mom, she is breathing on her on and she’s getting better. Alaina began calling me and I was told I could come over to her. Dr. Sande and I were side-by-side at the bed and she began telling me the plan....We would not harvest anymore. She possibly had a reaction to the medications given, or possibly to the platelets or blood (used to prime the machine prior to harvesting). They would send the platelets and blood to pathology to be tested and do 2 x-rays of her chest because if it was a transfusion reaction, there is possibility of lung damage. They were going to do several lab work-ups and maybe we would know soon what really happened. They were unable to get enough stem cells for transplant, but they will discuss other options at another time. They feel we have been overloaded in the last two Typically the affected patient has to be placed an a ventilator with a mortality rate of 2-5%. To be on the safe side, they have said that transfusions from now on need to be maternal in origin. That means from Mama and Daddy only. So we will have to be direct donors for her. We want to thank each of you who have been so willing to help in this area by volunteering to be donors. Should anything change, it is good to know that we have a very large list of donors.

We are safe at home now and have had a very restful day. When Alaina woke up from her 3 hour nap she was the most precious child anyone could ask for. She was almost like her old self, blowing kisses, laughing, and playing dress-up. She had her new favorite meal for dinner, oatmeal. That and milk is about all we can get down her right now.

Thank you all for taking time to read this VERY long update. We love you all and appreciate your concern for Alaina. Although the past couple of days have been extremely hard...we are blessed that the outcome was good....To God Be The Glory!!!

Jerri and Jeff

January 25th, 2007

Jerri called me this morning on their way to B'ham wanting me to pass this information along to everyone. She said she just had to call and praise God for how He has been with Alaina and the family during Alaina's illness and to thank everyone for their continued prayers. Jeff and Jerri, along with the rest of us, realize now more than ever the power of prayer!! Jerri wants us all to spend today praising God !! She said Alaina is feeling good, she is very active, eating good, smiling, playing... The oncologist said the other day she was a strong little girl. Today they are putting the catheter in. Tomorrow they go back to B'ham and will probably be admitted. Alaina's blood count is climbing each day, hopefully by Saturday or Sunday they will be able to start the stem cell harvesting. This will take 3 or 4 days to harvest enough stem cells, with each day taking about 4 hrs.

January 24th, 2007

Well, alot has happened since Monday. We had to go to Children’s Hospital on Tuesday to receive whole blood. That usually takes up all of the day. Her counts were so low, the Nurse Practitioner, Allison said that she is in virtually the same state she will be in if we go through with the stem cell transplant. Jerri and I are torn about the stem cell transplant. We don’t want to put Alaina through any more than she has to go through. We want the best care for our daughter, but the success rate for this therapy is not high enough for us to be comfortable with. Thursday we will have to go back to have her blood levels tested again. Even if they are not back to full strength, they will go ahead and install the catheter on Friday. If her levels are good enough Friday, they will go ahead with the stem cell harvest. I pray that she will be strong enough at the end of radiation that she will not need to have them given back to her.

They are all amazed that she has not had any fever to speak of. Usually by now a chemo patient has been in the hospital to be treated for a fever, which is a sign of an infection setting in. We are taking every precaution we know of to keep her environment “germ free”. I think it would be impossible to not expose her to something. This is a resounding testimony to all of the prayers going up for His protection to be around her.
Today, she has been great!!! Playing, laughing, running, smiling, all of the things she used to do. She has acted more like herself than she has in recent days. What joy it brings to know she feels good today. Sometimes I wish she could just say what she is feeling. Just to tell me what I could do to ease her troubles. The fact that her vocabulary is limited may be a good thing, I might not be able to get her to stop. Thank you for keeping up with us and please pray for our safe travels to and from Birmingham.
Jeff and Jerri

January 22, 2007

Hi everyone, thanks for taking the time to read the latest update. Today was a very interesting day. Alaina was scheduled to go to her pediatrician here in Gadsden to check her blood count levels. That did not happen. Instead she had to go back to Birmingham. On Saturday night she began having a little nose bleed. It was not very bad, just enough to make a parent worry. On Sunday it continued, so we called the doctor. We were told to go ahead and bring her to Children’s on Monday and skip the visit here in town. By Monday, she had a little bleeding in her gums and lips. This is a definite sign of low platelets. After a blood count test it was determined that she needed red blood as well. The problem with that was it was too late in the day to give it to her. It takes about 4-5 hours to receive a unit. Her white blood count continues to be very low.
Tracy with The Red Cross told me that Alabama is an import state. That means that the state consumes more than is donated. This really puts the Blood Drive turnout in perspective. There will be another Blood Drive this Saturday at Chick-Fil-A in Gadsden at 12 noon. I am not sure about the ending time. They contacted us through Tracy and wanted to hold one in her honor at there location. The Red Cross is going to bring in their donation bus and advertise it that way. If you were unable to give on Wednesday, maybe you can stop by Chick-Fil-A on Saturday.

We will go back to Children’s tomorrow for red blood and to see if her blood levels are where they need to be to begin the stem cell harvest. If they are, we will go back on Wednesday and have the catheter put in and the harvest will begin. She will be admitted for 3-5 days, or until they have taken enough stem cells out. The whole process honestly scares me. This is by far the most complicated part of the experience. The body is flooded with chemo to kill basically everything. Then the stem cells are given back to her to help her rebuild her own immune system from her own stem cells. They will not give them back to her until after radiation but, they want to get them now while her body is producing them. If we wait too late we run the risk of them not being able to harvest enough. Stem cells only reproduce a certain number of times. We will keep everyone posted as the week goes on. Love Jeff and Jerri

January 17, 2007

Well, what am I to say? Once again the love of our friends has overwhelmed us. This time a third party was there to witness the love of God that you have shown, The Red Cross. To say the blood drive was a success would not do it justice. The blood drive director was just floored by the support of all of you. They had planned on a goal of 80 units and realistically expected 50. This was a major understatement. I deeply regret the ones that were turned away at the church, but those can still give in Alaina’s honor at the local Red Cross. Jerri and I could never thank each of you enough for what you have done. I found it completely ironic that on the very day we held a blood drive, Alaina had to receive her first blood transfusion. She also had to receive platelets. She has had platelets before but not whole blood. We did not know what to expect. The whole process took all day. We arrived at Children’s Hospital at 10am and did not leave until after 5pm.

At 1pm today we also had another meeting with Alaina’s stem cell team. We had a lot of questions. I don’t think they have been drilled like that since there last mid-term in college. To try to go into detail about everything would put some of us to sleep so I will put it like this. Stem cell transplant therapy is a very risky procedure. Multiple patients have died during and after treatment. This is by far the scariest part of this nightmare. She will be on an isolated floor for a minimum of 3 weeks per cycle. Visitors will be very limited. Her blood count level will be extremely low and any infection would be very serious. We return to stem cell on Tuesday for blood work and Wednesday they will place another catheter where they will harvest the stem cells. We will be admitted and will spend 3-5 days. The actual transplants will not take place until chemo and radiation is completed, approximately 10-12 weeks from now.

We are scheduled to have the next MRI on Wednesday, Feb. 7th. We will be very anxious during this time, as this will give us a good idea about how well the chemo is working....EVERYONE PLEASE PRAY THAT EVERYTHING LOOKS GOOD!!!

They are in the process of getting Alaina scheduled for neuro-psychological testing, which is required prior to being any radiation. This will give them a base line that can be used to see if there is any developmental problems after radiation. I know this is a lot of information. Thank you for taking the time to read all of this. And by the way, Alaina is doing great. Well, as great as can be expected. She has more energy than one would think. We hope to have some video up soon so you all can see her in action! Thank you for all that you have done so far, and please continue to pray that she will be victorious over this giant. She is so small, but God is so big. It is not the size of the mountain, but the strength of the mountain mover. Love Jeff and Jerri.
 

January 14, 2007

Hello everyone.  We are home!!!!  We were discharged on Thurs. the 11th., after treatment without any complications!!!  Alaina ate alot better this time and didn’t get sick until the day before her last treatment.  Although she was sick, it was short lived....Thank the Lord!  On the way home, she ate almost 1/2 of a cheeseburger from McDonald’s and drank almost all of her milk.  Last time she didn’t eat much of anything for around 5-6 days and she was having to take Zofran for nausea at home.

While in the hospital, we had another hearing test for them to compare to the baseline test performed initially....IT WAS NORMAL!!  One of the chemo medications (Cisplatin) causes high frequency hearing loss, so they check it very closely.  If she begins to exhibit some loss, they would adjust her dosage.

We have had NO PROBLEMS with her central line this time!!  There is no redness or any sign of discomfort to her!!  I’m glad we came home with the line, but it made me very nervous, because the care of the central line is all up to us.  We have had a crash course in flushing the lines with saline/heprin, changing the dressing (using sterile technique), monitoring her home medications, providing mouth care to prevent sores, giving her shots to increase white blood counts, and keeping up with numerous appointments.

Alaina is taking very high doses of chemo.  Her protocol includes the following drugs: Vincristine, Methotrexate, Cytoxin, Etoposide, and Cisplatin (these are chemo drugs); as well as some rescue drugs to offset the side effects of the chemo: Leucovorin, MESNA, and GCSF shots.  During the week that we are in the hospital, she receives these drugs in various combinations.  This is alot of poison going into her little body, and she handles it like a trooper!!  In fact, it is very hard to keep her in her room.  Ask any of her nurses, she is ALWAYS in the hall.  If she is awake, she wants to be moving!!  She has figured  something out, it’s fun to stand on the IV pole and let Mama push her around. Ha!  I thank the Lord for the strength HE has given her.  The nurses have a nickname for Alaina, “Little Miss NO”.  They call her this because anytime anyone looks at her, talks to her, or tries to get close to her...she says, “No”.  If I had been in her shoes for the past 2 months, I would probably be saying alot more than that.  Although it sounds as if she is non cooperative, she is very quick to tell everyone “thank you”, for anything.  I’ll cover her up and she tells me “thank you”.  The Lord has given her a very precious spirit.

Immediate prayer requests:

1. We go to Gadsden Pediatric Clinic tomorrow to have her counts checked...Pray counts              will be good.

2. She will have another MRI prior to beginning the next round of chemo, which will be compared to MRI after surgery . . . Pray for NO ACTIVITY and NO NEW GROWTH!!

3. We were checking into Proton Beam Radiation in Boston, but have been told Alaina is not appropriate due to the high amount of Methotrexate she has received . . . Pray the Lord will show us in a definite way where she needs to receive radiation. 

Jeff and I love each of you and are blessed beyond measure by the support and love which has been poured out to our family.  We thank God daily for our friends and family, who have been with us during this time.

In Christ,

Jerri

January 6, 2007

SUPERDAY!!  Alaina woke up and was in a great mood all day.  After waking up she ate eggs, biscuits, jelly and grits, fruit loops, oranges, milk and juice.  This is particularly encouraging because during the last treatment, she was sick and not eating as well.  Alise and Trent came for a visit and all three children played together.  Alaina played, ran, squealed, sang and kept up with them the whole time without showing any fatigue. 

No chemo today, Alaina took the "rescue medication" which helps remove the remainder of the chemo medication.  Just a clarification: Alaina has to take five different chemo medications (sometimes in combination) which are administered over five days.  For 3 of those days she will receive a very dangerous drug which requires the nurse to stay in the room to check for reactions. Alaina will continue treatment tomorrow (day 3 of 5) if her body clears the chemo from yesterday.

Alaina is scheduled for a hearing test Monday which will be compared to a previous baseline test to see if there has been any high frequency hearing loss (a side effect of one of the  chemo drugs).  Also, she will be seen by a pediatric optometrist to check her eyes since she has been squinting some (she was checked previously and all was well).

The rest of the day, Alaina played and was happy and resting well.  Even the nurses have commented on how well she has done today.  What a great day!  

January 5, 2007

Good day, Alaina is finishing up today's Chemo and is eating like a horse. 

January 4, 2007

After a long day, we got a room for Alaina around 6 in the evening.  Alaina's procedure (the reinstallation of the central line) was the 2nd procedure of the day, but the first procedure apparently had some complications.  As a result, Alaina did not get back for her procedure until 11 a.m. 

One hour to do the procedure which went into a deeper vein.  During the procedure, the surgeon believed he discovered that Alaina may have been having a reaction to the tape and it may not have been an infection.  So, a dermatology consult has been ordered and should be done Friday or Saturday to give us some idea of whether the tape is an issue.  Because of all the things related to procedures and such, Chemo did not start today, but will begin tomorrow.  For the time being, Alaina is being hydrated with IVs.

So, after a rather long day, one hour for the procedure and a couple of hours in recovery, Alaina is a little grumpy coming off the medicine.  All she really wants tonight is her mommy so everything else seems fine.  There were no complications to the procedure itself. 

December 31,2006

We have had a wonderful time this holiday season. Alaina is getting stronger with each day. Today she has eaten almost normally, and has eaten more than Alise at times. She is much less clingy to me and has been playing and laughing more. Praise God!!!

It has been nice to be at home during Christmas. We really missed being able to spend time with our extended families, but we have really gotten to enjoy Trent, Alise, and Alaina alot and the quality of our time together is much more meaningful this year.

Initially, when everything was happening so quickly, and Jeff and I were away from Trent and Alise suddenly and for sometimes days at a time, Trent really began having a hard time. He would have times that he would cry and be almost uncontrollable. Jeff returned home to be with Trent and Alise and I remained at the hospital with Alaina. We have explained much more to Trent than we did initially and it has really helped him deal with things. We told him that his sister has cancer and that the Dr. had to take it out of her head, leaving the scar that he can see on her head. We also shared with him about the medicine that Alaina is taking and that she will probably loose her hair. He has gone with us to have her blood counts checked, and we used this time to encourage him to pray and ask God to help her counts come up. Some of the prayers he has prayed have really touch me. They are very sincere and I believe God hears the prayers of children. We have tried to keep Trent and Alise in their regular schedule of church activities (with the help of wonderful friends), but they have missed some. I was very pleased to hear Trent say, one day out of the blue, “Mama, I miss my church. I want to see my friends.”

Alise has really not realized what all is going on. She is very happy and content. She plays, laughs, and gets into things just like normal!! The difference between the two girls is that Alise is VERY curious and investigates EVERYTHING whether it gets her in trouble or not, and Alaina will ask before she does anything. Also, Alaina is the mother of the two. She is always concerned about Alise and makes sure that she is taken care of.

They are so different, but both so precious. We are truly blessed through our children!!!

Today has been very difficult for me. Last night I was reading more about Atypical teratoid/rhabdoid brain tumors. We have been told the nature of this type tumor, however I had not been ready to read further about the prognosis, until last night. After reading several articles, I was very discouraged and felt that all my hope was gone. Reality is, that if Alaina survives this horrible disease, IT WILL BE A MIRACLE!!! Don’t get me wrong. It’s not that I doubt the power of my Lord, but that I wonder what HIS will is going to mean in my life and the life of my precious little girl. Of course, my prayer is that His will is going to be to allow Alaina a long, healthy, and prosperous life here on earth. That she will be married, have children, and most importantly love her Lord and Savior with all of her heart. (I pray this for all three of our children), but no matter what the Lord’s decision is, I will love Him unconditionally and I will not let Satan destroy my love for God. Not that this is an easy road to walk, but Jeff and I both know who is in control.
As Jeff and the kids and I walk this road with all of you...our family and friends, I want you all to allow God to work in your lives, no matter what happens. I know that we have said how grim a picture the doctors have painted for Alaina, but we serve THE GREAT PHYSICIAN. He knows more about Alaina and what is going on in her body than any doctor could possibly know, even with all the high-tech treatment we have now.
Atypical teratoid/rhadboid tumors (ATRT’s), commonly present themselves in childhood. They have a very rapid progression with a survival time of less than 1 year. From what I have read, removal of the tumor is positive, however, the growth of the cells left behind is usually so rapid that the cancer either returns where it was originally or presents itself elsewhere. Even with the very aggressive chemotherapy, stem cell transplants, and radiation which are planned for Alaina, the outcomes are usually very disappointing. When a child reaches 3 yrs., it appears chances of survival are a little better. I tell you all this so that we collectively can pray that the Lord will help doctors to make a huge breakthrough in the treatment/cure of ATRT brain tumors, beginning with Alaina. The cure of this disease is definitely A GOD- SIZED TASK!!! I love you all!! Jerri

The blood drive is definitely, Wednesday, January 17th ....from 3 p.m. to 8 p.m. at Dwight Baptist Church. Several people have expressed to me that they may not have Alaina’s blood type.  This DOES NOT matter. Come and give anyway. This will help others who need blood, as well as give Alaina a credit with the American Red Cross, in the event that she needs additional blood products. Thank you for your support!!!!

December 28th

Today the oncology nurse practitioner, Richard called us back to set up our next visit to Children’s Hospital. We will go back on Thursday, the 4th of January. Alaina will have to undergo a minor surgery to install a new central line early in the morning. The first central line became infected and had to be removed. After they are satisfied that the line is working properly, she will begin her 2nd round of chemotherapy. Most experts on this have said that she will become more weak and vulnerable after each round. It is our immediate prayer need that she will not be exposed to any virus or infection of any kind. Right now she is as close to normal as she has been in a long time. Keep praying her up.

December 27, 2006

Today we took Alaina back to our pediatrician for blood work.  Her counts were great!  White blood count was 25,000.  Red blood count was 3.34 (1.8-6.6 is normal).  Platelets were 157,000 (150,000-450,000 is normal).  This is a major improvement over the last test.  Her white blood  count was so low last time it did not even register on the machine here in Gadsden.  Children’s had to tell us in Birmingham that her white blood count was 100.  She is acting more like herself than she has in what seems like forever.  The nurse practitioner that is handling our case has seen the results and is scheduling our next round of chemotherapy.  It will probably be next week but we do not know for sure just yet.  We also nailed down a date for the blood drive today. It will be on Wednesday, Jan. 17th at our church Dwight Baptist, in Alabama City.  This blood drive is in Alaina’s honor.  That means, the amount of blood donated will be set aside for Alaina’s use at a later time.  She probably will not receive any of the actual blood donated, but she will be credited the amount given and can use that amount at any time during the treatment.  The exact time of the blood drive will be provided for anyone who can participate.  We have been told that Alaina will more than likely require transfusions throughout her treatment and this would really help in offsetting expenses.  Much thanks to anyone who can help Alaina out.

December 22, No infection found and no bacteria growing in her blood.  She had to be monitored for 72 hours because of the fever.  White cell count is coming up, at 900, needs to be around 1400.  But because it is improving Alaina is headed home.  Family is home

December 19, Alaina has returned to Birmingham to Children's Hospital because her blood platelets were low.  Because of a fever, she is having blood work done to test for an infection, which will take three (3) days to grow the culture to determine if additional treatment is needed.  

December 16, It has been great to be home, but we are really seeing a decline in Alaina’s activity level.  She has been pretty sick from time to time.  Today we gave her Zofran (for nausea) on a regular basis to try to stay ahead of her sickness and that has seemed to help.  She is slowly drinking and eating more, but it is still far from normal.  The weather today was so beautiful, so Jeff and I took all 3 kids outside to play.  This helped Alaina tremendously!!  She even wanted to slide and swing!!  Because Alaina’s blood counts are beginning to plummet, thus compromising her immune system, they have advised us to limit her contact with others until her counts start to climb again.  We will be going to have blood work Monday, Dec. 18.  It is possible a blood transfusion will be required at this time.  Our immediate prayer concerns are that Alaina will develop more of an appetite and that her blood counts won’t require a transfusion.

December 13, NO BACTERIA GREW!!!  The infection was only in the central line and had not spread to Alaina!!  They stopped the antibiotics and her fluids and said if she could at least begin drinking, we could go home.  She was able to drink enough that they felt discharge would be safe.  We arrived home around 8:00 p.m.

December 11, we were scheduled to come home, however an infection in her central line would require that the line be removed and antibiotics be administered.  Blood cultures were taken to see what type of bacteria, if any, grew.  Alaina had a reaction to the antibiotics, which required a change in the antibiotics given.

December 6, sent us for renal scan to be sure kidneys were tumor free.  This type tumor manifests itself in 3 areas, the brain, spine, and/or kidneys.  This p.m. the results were...NO TUMORS IN THE KIDNEYS!!!

We continued with chemo through December 10.  Alaina was nauseated from time to time, but it was manageable.

December 5, NO CANCER CELLS IN SPINAL FLUID!!!!  We began chemotherapy today... no significant problems.

December 4,  Alaina had surgery to place a central line, necessary to begin treatment.  While sedated, they would perform a spinal tap to be sure there were no cancer cells in the spinal fluid.  Alaina was scheduled to begin chemo on this day, but was unable as the hospital didn’t have the medication available.

November 30, NO SPINAL TUMORS FOUND!!!

November 29, We returned for a MRI of her spine, to rule out additional tumors.

November 27, We returned for follow-up with Dr. Satchivi, who introduced the name of the tumor....Atypical Teratoid Rhabdoid Tumor  (ATRT)...very rare, very aggressive, and very malignant.  Our hearts sank as we were then referred to Dr. Reddy, our pediatric neuro oncologist.  She talked with Jeff and me for quite some time and explained the course of treatment, which included 3 months of chemotherapy (1 week of treatment, 3 weeks home each month).  That was if there were no complications.  Following chemo, she would require radiation, 5 days a week for 6 weeks.  Throughout this time, there would be many tests, blood work, possible stem cell transplants, blood transfusions, etc.  With all of this treatment, she said the prognosis wasn’t great, maybe 50% chance that Alaina could overcome this beast.  We returned home very discouraged, confused, and overwhelmed.

November 19, We were discharged, getting home around 3:00p.m.  Around 9:30 p.m., Alaina began vomiting repeatedly.  We were told by the attending physician to return to the E.R. at Children’s immediately.  The Dr. felt they may need to adjust the tapering of her steroids.   They got her vomiting under control, changed her steroids, and we were discharged, getting home around 8:00a.m the next morning.  The next couple of days, our entire family came down with a bug, so we are unsure if that was what Alaina had, or if it truly was the steroids.  The next week, Alaina did great!!  We all prayed earnestly for the tumor to come back benign.

November 17, Went to regular room.  Alaina having no significant problems.   Had another MRI, which confirmed...THE TUMOR WAS GONE!!!

November 16, Surgery began 4:40 p.m.  Approximately 7:30 p.m., the Dr. came out very confident that the tumor had been successfully removed!!!!

November 15,  We were moved to the Neuro-Surgery floor and went for MRI in the a.m.  Around 5:00 p.m., Dr. Satchivi brought news that the MRI showed a small amount of the tumor remained.  It was close to the temporal lobe and he said that, the way Alaina had to be positioned for the first surgery, it was understandable how it was missed.  His suggestion was to go back for a second surgery the following day.

November 14, The CT scan of chest, abdomen, and pelvis was CLEAR!!  Alaina was in PICU and progressing rapidly.  Every time we saw her, she had improved...talking, waving, playing, etc.

November 13, Alaina was the first case, which began around 9:15 a.m.  We had a multitude of family and friends with us throughout the almost 7 hr. surgery.  Many, who were unable to be there, called us frequently for updates.  (We are so blessed to have all of you in our lives).  Dr. Satchivi told us, following the surgery, that the tumor did look more malignant than benign, but the pathology report could take up to 3 weeks.  He did feel confident that he was able to remove most, if not all of the tumor, but there would be another MRI to make sure.  When we first saw Alaina following surgery, she was moving all four extremities, opening her eyes, and calling “Mama”, which was music to my ears.

November 12, Dr. Satchivi was to be Alaina’s surgeon, and he came to discuss a plan with us.  The MRI revealed that the tumor was very deep, originating from the choroid plexus in the left lateral ventricle and growing upward into the occipital and parietal lobes.  He discussed the risks of having to go through good brain tissue in an attempt to remove the tumor.  These biggest risks included loss of function on the right side of her body, speech problems,  and/or visual deficits.  He actually said, “There will be some damage, we just don’t know the extent until post surgery.  The plan was to not only biopsy the tumor, but to remove as much of it as possible without compromising Alaina’s life/function. We shared with Dr. Satchivi that we would all be praying for him, that the Lord would guide his hands as he made judgment calls on what was safe to remove. 

November 11,  an MRI was done on her brain, and a CT scan of Alaina’s chest, abdomen, and pelvis. 

November 10, Jeff and I returned to the Dr. with Alaina, expressing our concerns.  He said that since we related her onset of nausea/vomiting to her fall, that he would order a CT scan to ease our minds.  We were all surprised that the scan showed and very large tumor, and our Dr. had arranged for us to carry Alaina to Children’s Hospital in Birmingham. 

October 31, Alise and Alaina had an appointment for their 2 yr. well-care visit.  Alaina was acting fine, with no nausea, or any other apparent problems, however I relayed to the Dr. her intermittent nausea/vomiting.  Her  occasional symptoms continued.

October 23, she began vomiting, we called the Dr. wondering if this could be related to the fall.  At this point symptoms were consistent with a virus.  Alaina would have sporatic episodes of vomiting, after which she would play, eat well, and appear normal.

October 21 of this year, Alaina had an accident that would prove to be a blessing in disguise.  We normally bathe the girls together, and this Saturday night was no different from any other.  Jeff had given them both a bath, dried them off, and was about to dress them, when Alaina fell and hit her head on the bathroom floor.  We felt that taking her to the Emergency room was warranted, as she acted sleepy and dazed.  By the time the E.R. Dr. saw us, Alaina was beginning to act herself again and we were sent home.