Barrett Thomas Harris daughter of Neal and Audrea Harris granddaughter of Wanda Harris & Teddy and Janie McCain Born May 25, 2003

Barrett was diagnosed with acute lymphoblastic leukemia on Tuesday, September 16, 2003.

Update

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Wednesday, December 31, 2003 (Day +13)

11:00 am - Mom passes along great news to Barrett's Prayer Warriors! Her white blood cell count is 2.6 and her nutri-fill counts continue to go up. She is making her own blood products! Barrett is hopefully getting off of the morphine drip today and she is -3 antibiotics. Her rash continues to improve. By Friday, they hope to give Barrett milk again.

If Barrett continues to do well, the family will get to go to the Ronald McDonald House by the end of next week. There are several things that will have to happen in order for the family to get to leave. Barrett will have to tolerate food, tolerate the medications through her nose tube, and the diarrhea will have to clear up.

Please continue to pray for all these things to happen and for Barrett to have a full recovery. We want to wish everyone a very Healthy and Happy New Year!

Amie Joye

Tuesday, December 30, 2003 (Day +12)

11:00 am - Good Morning Prayer Warriors!  Barrett has started smiling again and she is starting to feel better.  Her white blood cell count is up to 1.9 today, up from 1.1 on Monday, and her nutri-fill count has not come back yet today.  Someone asked what nutri-fills were and the best way to explain it is nutri-fills have to do with your immune system, for example on Monday they were 77%. Once your nutri-fill count comes up, you can start fighting infections.

As I stated before, Barrett has started rewarding us with her toothless grins once again, we sure have missed them.  She has started receiving Occupational and Physical Therapy again and now we just need to build her strength back up.  The Graft Versus Host Disease still does not appear to have gotten any worse, please continue to pray that it does not. 

There is not a lot to report. She is still receiving many medications throughout the day and the Doctors still comment on how pleased they are with her progress.  They have started changing some of Barrett's medications to see if the medications could be causing her rash or if the rash is truly GVHD.  Also, she still has diarrhea and it is hard to tell if that is from GVHD or from all the antibiotics that she is on.  The fluid on her lungs does not appear to have gotten any worse and her vitals continue to be normal.

I continue to be amazed by this child, she is such a fighter.  I will try to report to Barrett's Prayer Warriors a little later when I have more information.  Please continue to pray that the GVHD does not get any worse and that Barrett will have a full recovery.

Mom  

Sunday, December 28, 2003 (Day +10)

8:30 pm - Good Afternoon Prayer Warriors! Barrett's fever is finally down but she still does not feel very well. They have her on steroids to help fight the Graft Versus Host Disease (GVHD), along with other medications to help fight this, and the steroids can sometimes mask a fever. They have started drawing cultures every day to make sure that she does not have an infection. With a fever possibly being masked, an infection could come along and we could possibly not know it.

Her rash is not as bad and she has a place on her face that looks like a sunburn that is from the radiation. The Doctors are still very pleased.

Barrett has started making her own blood products. Her white blood cell counts are .8 today, up from .5 yesterday. Her nutri-fills are 480, up from 280 yesterday. With her nutri-fill count coming up, she should start to feel better soon.

The mucositis still did not get very bad and what she does have of it should start improving soon. Thank you Prayer Warriors! You kept Barrett from suffering a lot of pain. We need to continue to pray that Barrett does not get GVHD any worse than she already has it.

The chest X-ray shows that Barrett has a little bit of fluid in her lungs and they have increased her lasix. This drug will help her urinate more and hopefully, the fluid will come off soon. Her respiratory has been a little increased and that is probably due to the fluid and the fever but all her other vitals have been normal. The steroids can sometimes make your blood pressure increase but so far that has not been a problem. She is such a fighter.

Neal and I will be glad when she starts to smile again. It is no fun to watch your child feel so bad and not be able to do anything for her. I held her all day on Saturday and she just slept in my arms, not that I mind holding her.

Just to remind you how awesome our Lord is, how much He is truly in control and that He is truly listening to your prayers. It is not normal that she should start engraftment so soon. The Transplant Doctor was not expecting this until Day +14 through Day +21. Barrett started engraftment on Day +7, Christmas Day, another great Christmas present. Engraftment this early is not unheard of but just unusual.

Our prayers for the donor were answered because the donor provided Barrett with a lot of healthy cells. This is not always the case for a donor. The Doctor had stated that since Barrett received so many healthy cells that she should start to heal sooner and she has starting healing sooner than was expected.

Our prayers were answered regarding the mucositis. They tell us that the mouth care we gave Barrett during chemo and radiation and a drug that they are giving her to help fight mucositis is the reason she did not get this as bad as they anticipated. Well, in my heart, I know that the Lord had His healing hand on Barrett and He protected her.

Our prayers continue to be answered so please keep up the good work. Please continue to pray that Barrett's vitals stay normal, that the GVHD does not get any worse and that she will start to feel better soon. Please pray that Barrett will have a full recovery.

Mom

Friday, December 26, 2003 (Day +8)

9:00 pm - Good afternoon Prayer Warriors! Barrett is doing better. She has had fever for the last two days. At first, the fever did not get over 101.0 but last night it stayed around 103.8. Her cultures are still negative and the X-Rays of her stomach and chest are clear of infection. As of right now, they do not know where her infection is coming from but her fever is staying around 100.3.

Barrett has started getting a little rash and we are waiting for her Doctor to come in and look at it now. She is on five antibiotics so she is well covered for anything and everything. Bless her heart, she does not feel well.

Barrett still has not developed mouth sores but her stomach and throat are bothering her. The sores are probably in this area. They are still very amazed that she has not gotten mucositis any worse than what she has, I still know that our prayers are being answered.

I asked if Barrett could be engrafting and they still say it is a little early, I am still not convinced. Mother's intuition tells me that she is starting engraftment. Her white blood cells were .3 today and that is up from two days ago. In case I have not mentioned, the signs of Graft Versus Host Disease (GVHD) are rash, fever, vomiting, and diarrhea.

Well I am back, the Doctor has just left and Mom's intuition was right, her Transplant Doctor believes Barrett is starting to engraft. They are going to start her on steroids tonight and they already have her on a medication to prevent GVHD. The steroids will be another medicine to help fight the GVHD from getting worse.

They have also found an infection in her stool called C-Diff, but this infection does not cause fever and they now have her on an antibiotic to control this infection.

If you remember, I have stated before that a little GVHD is good because if there are any leukemia cells present in her body the Graft will attack those cells and kill them. Please pray that the GVHD does not get any worse than it is right now. Our prayers have been answered for the mucositis so Barrett needs her Prayers Warriors now to pray for the GVHD.

If you remember the young man that I mentioned regarding the snow and white blood cells, good news, he also started making blood products today. He stated that all he wanted for Christmas was white blood cells and on Christmas morning his counts had not changed. I asked the nurse what he said when she told him, because she new he would be upset, and he said, "I will accept the Lord's will". What an awesome attitude!

When I asked the nurse what he said when he found out that he was making cells, he said his Dad said, "you were making cells on Christmas, they just did not show up until today". Let me tell you, if you do not have the right attitude in this place, it could drive you crazy.

I forgot to mention, Santa Claus came Christmas Eve and delivered her presents. We had a wonderful Christmas and there will never be another Christmas as special as this one has been. The Gift of Life will be hard to top. Many of you have brought Barrett gifts while we were at home and I would like to mention that I will think of everyone of you each time I
see your gift and I will always remember how special you are in Barrett's life.

Barrett is cuddled up and sleeping on my chest as I write this update. She is talking in her sleep and making the sweetest sounds. She says "thank you and please pray for me".

Please continue to pray that Barrett will have a full recovery.

Mom

Thursday, December 25, 2003 (Day +7) 7 months old

Merry Christmas Prayer Warriors! Barrett continues to do well and all our prayers are being answered. Although Barrett has developed mucositis and has been vomiting, she still has her Doctors very pleased. Barrett has not developed the mouth sores but her white blood cell counts continue to drop.

It is very good that Barrett is getting the mucus up and out of her so the vomiting is not a bad thing. She has ran a fever all day Christmas Eve and they have drawn cultures to see if they are going to grow anything. So far the cultures continue to be negative.

Barrett does not have an appetite but has started receiving TPN's through her central line. This provides her with the calories and nutrients that she needs. She will continue to feel bad for probably another ten days or when she starts making her own blood products.

We have had wonderful Christmas and we know that we have a lot to be thankful for. As I stated earlier, our prayers are being answered. Keep up the good work Prayer Warriors! We started our own family traditions by reading The Christmas Story, Twas the Night Before Christmas, and The Candy Cane Story. I must say being in the hospital was not bad, we were among all her nurses. Each one we love very much and they made our Christmas very special.

When my Mom left this morning and gave me a hug and she stated that this was the first Christmas that she will not have been with me, it saddened me and then I realized I have a family now, and we have to start our own traditions. Neal and I were very anxious about Barrett's first Christmas and we know that we were given the best gift anyone could receive and that is "the gift of life". Please continue to pray for Barrett's donor.

There is a remarkable young man a couple of doors down from Barrett's room and he has received a bone marrow transplant and he is Day +16 and is doing very well. What is so remarkable about him is his attitude. I first learned about him when he was featured along with Barrett in the "House Organ". That is the magazine that Barrett's picture was in.

This young man is a Christian and he is also in a Christian Band, the band got to appear once before he was diagnosed with his illness. The other day when it was snowing one of the nurses asked that he come and look outside at the snow and when he saw the snow he said, "enough white blood cells for us all". I cannot get that out of my head, I will never look at snow the same way again.

I cannot express enough that I know that Barrett is doing well only because all our prayers are being answered. I thank you from the bottom of my heart for your care and concern for my child. We still have a very long road ahead of us and we continue to pray that she does not get mucositis any worse than she has already received it.

We also pray that she does not get a bad case of Graft Versus Host Disease. A little of the GVHD will be a good thing because if there are any leukemia cells left in her body this will attack those cells and kill them.

Please continue to pray that Barrett will have a full recovery.

Thank you and have a very Merry Christmas.

Mom

Wednesday, December 24, 2003 (Day +6)

10:00 am - Barrett is beginning to get sick, but doctors are still pleased with her progress. She is now on a continuous morphine drip. Mom may have an update later but her and Dad wanted to wish everyone a very Merry Christmas.

Amie Joye

Future Doctor

Tuesday, December 23, 2003(Day +5)

9:45 am - Good Morning Prayer Warriors! Barrett continues to amaze her Doctors, I think it all has to do with the power of Prayer and our Lord protecting Barrett. She has started getting her mouth sores, but continues to smile and play. She has started receiving morphine on an as needed basis and that is not to often.

Her Transplant Doctor stated yesterday that he hopes Barrett will start recovering 10 to 14 days from now. Please pray that this will be sooner than later. Once the engraftment starts (10 to 14 days) to take place that means she is making her own blood cells and that the transplant is working.

Both Dad and I tested negative for the flu virus on Monday and I got to go in and spend time with Barrett. Unfortunately, Dad had a fever Saturday night and he will not be allowed in to see Barrett until Wednesday.

We are so looking forward to spending Christmas with her, the staff at Vanderbilt have made it very special already. The Child Life Resource Specialist came by to tell me yesterday that Santa Claus comes to visit every child on Christmas Eve and leaves them a sack full of new toys. All these items are donated by people so that the children at Vanderbilt have a Christmas. Is that not amazing?

Neal and I received a phone call last night from one of Barrett's nurses and the phone line was full of the most amazing sound. The nurse had Barrett laughing so hard, you could almost picture the scene. I have never heard her laugh that hard but it was music to our ears. I know that when I am not there that she is in good hands, both with her Grandmothers and her wonderful nurses.

Again, not much to report on upcoming things for Barrett. We are just having to wait and see how she does and she continues to get treated with many medicines. The nurses are very busy with keeping up with her care. Our biggest concern right now is the mucositis and hoping that it does not get to bad and that she does not go on a ventilator. After this hurdle and she starts to heal and make her own blood products, the next concern will be Graft Versus Host Disease (GVHD).

Please continue to pray that Barrett will have a full recovery and please remember the donor for her priceless gift.

Mom

Monday, December 22, 2003 (Day +4)

10:00 am - Barrett is still doing very well. She slept through the night again last night. There will not be much going on today. They will continue to check her vitals and watch for other side effects.

Mom is going back for her flu test this morning. Hopefully, she will be able to spend time with Barrett today.

There are pictures in the photo gallery of the transplant procedure. Be sure to check them out.

Continue to pray for Barrett's full recovery and for Mom to be well enough to see Barrett today.

Amie Joye

Sunday, December 21, 2003 (Day +3)

3:00 pm - Hello Prayer Warriors!  Barrett is doing just fine.  Her appetite has decreased and she has started getting sick at her stomach.  She has been vomiting the mucus and that is a good thing because she is able to rid herself of it that way.  She continues to smile for us and rarely has to receive any morphine.

The Doctors stated that her throat is very red and there are still no signs of any sores.  They state that the sores are coming.  She has not had any fever and continues to please the Doctors with her progress.

Her Transplant Doctor stated that the stem cell transplant had a lot of healthy cells in it and this should help her heal quicker.  She is still testing negative for the flu and we pray that she continues to do so. 

Hopefully, I will be able to go back into her room on Monday and hold my sweet baby.  All we are trying to do now is to keep Barrett comfortable and to treat her mouth with a special solution.  This solution helps to prevent bacteria from growing in her mouth.  Also, they are trying to let Barrett go without a diaper as much as she can, this helps her bottom area and keeps bacteria from growing in this area.  We still have to change her diaper every hour.

I wanted to share the radiation pictures with everyone and as soon as the pictures of her receiving her transplant have been developed, I will share them also. If you notice the blue thing that Barrett is laying on in the radiation pictures, that is the cast that I was referring to that was made for Barrett so that she would not roll off the table during radiation.

Please pray that Barrett's body will start making its very own blood products soon and that she will have a complete recovery.

Mom

Saturday, December 20, 2003

12:15 pm - Barrett got a little sick again last night but she is still doing well. There are some new pictures for you in the photo gallery. They are of Barrett's first Christmas and Barrett being prepared for radiation.

Amie Joye

Friday, December 19, 2003

9:00 am - Mom says Good Morning to all the Prayer Warriors! Barrett did very well last night receiving her transplant. So far all is well. Barrett did get a little sick to her stomach. There were signs that the mucousitis is starting. She is still eating well and playing. The Doctors continue to be pleased with her progress.

Mom is feeling better but she still can't go in to see Barrett.

Please pray that Barrett will have a full and quick recovery. Please pray that Mom will feel better and get to see Barrett again soon.

Amie Joye

Thursday, December 18, 2003

Santa's Little Helper

5:15 pm - Good Evening Prayer Warriors!  The donor's stem cells arrived at Vanderbilt about 3:00 p.m. this afternoon and Barrett is to receive the transplant about 7:00 p.m. tonight.  Please pray for her during this time.  As I write this update it is through tear filled eyes, it has been such an overwhelming day.

Barrett continues to do very well and still has not gotten sick from the radiation or the chemo treatments.  She continues to amaze me.  She is still eating very well and continues to play with all her toys and of course, rewards us with those precious toothless grins.  Those smiles are the best; they just warm your heart.

I still am not able to have contact with Barrett and probably will not be able to hold her again until Monday.  This mother's heart aches very much right now, the need to hold her child and whisper to her that everything is going to be all right is weighing very heavy on me.  The Grandmother's are doing a wonderful job caring for Barrett and I know in my heart that they can care for her just as good as I can, but it still does not make the miles between me and Barrett any easier to deal with.

I feel the need to express that I believe this is the best Christmas that I have ever had.  I have been blessed with a wonderful child, a gift from someone's heart, and many people who continue to care about Barrett and pray for her daily.  What more could I ask for?  Your emails, Christmas Cards, and your special gifts give me great joy and comfort right now.  Your encouraging words and prayers keep my head above water and I do not know how to express my sincere thanks.

My child is being given another chance at life this Christmas by someone that is a total stranger and they are doing this out of the goodness of their heart.  That is the best gift that any mother could ever receive.  As I sat down to write to the donor last night, I never thought I would be writing such a letter, this only happens to other families.  And here it is happening to my family and instead of letting myself get angry about it, I have taken that energy to make myself stronger and hopefully make a difference.

There will not be much happening the next couple of days with Barrett.  She has finally finished her chemo and radiation so maybe now she can start growing her hair back.  The Doctors say it will take 14 to 21 days for the engraftment to start, so now we wait and pray that Barrett starts making her own blood products and that she does not get sick from the mucositis.

A special note to all of our friends and family who continue "to do" and "to give of your time". You have truly been a blessing to us!

Please pray that Barrett will have a full recovery.

Mom

Personal note to Barrett:

It has been three days since I have gotten to hold you and I miss your sweet smell and those big blue eyes looking up at me.  This has been the longest three days of my life but I know staying away from you right now is the best thing for you.  Remember, I always have your best interest at heart.

I will never forget the look in your eyes before one of your radiation treatments. Your eyes were full of questions as to why I was letting them do this to you again. At least that is how your look made me feel.  As you lay on the table getting ready to receive your treatment, I bent down to you and spoke to you very softly and gave you your pep talk.  As my hair brushed against your face, you started to relax and soon you were asleep and when you awoke your treatment was complete.  You immediately looked for me and I was there for you to pick you up and let you know how proud I was of you.

When you look at me with those questioning eyes, asking how am I supposed to react to all this, you seem to always want to be so strong and it hurts me so much that I cannot be there for you through all of this.  There is something about a mother, a gift that she is blessed with, "she always knows how to make everything all right".  

You are to receive your transplant this evening and I wrote a letter to your donor last night.  I never in my life thought that I would be writing such a letter, this kind of thing only happens to other families.  I know in my heart one year from now we will be able to meet this very special person who has given you a gift truly from her heart. 

Barrett, so many people are constantly doing things for you. You have touched so many lives and I feel so honored to be your mother.  I hope that I will teach you to give as freely as children and adults continue to give to you.  You are truly blessed.  Always remember that there are those who are less fortunate than you and that when you think you may have it bad, someone else has it worse. 

There are pictures of you all over this house, everywhere that I turn there is a picture of you and every time I look at those pictures I ask myself how me and your father could create someone as precious as you.  You are such a beautiful baby and a very happy one too.  For all that you are going through, you act as if nothing is happening to you.  As I told you before, you are the answer to my prayers.  I prayed for a healthy and happy baby and you are just what I prayed for.  I know that you are going to beat this disease, my mother's intuition feels very strong about this and I am so very proud of you.

I Love You With All My Heart,

Mom

8:00 am - Good Morning Prayer Warriors! I find myself writing this update with a lot of time on my hands. As Amie Joye stated in an earlier update, I have tested positive for the flu virus. I started feeling bad on Monday evening and went to the Doctor on Tuesday. The Doctor, in Clarksville, stated that I just had a cold virus and gave me a shot of penicillin.

Barrett’s Transplant Doctor stated that until I had a flu test I could not go back in to see her. So I went to the Hemoc Clinic today and they tested me for the flu virus and I tested positive. I had the flu shot so I guess maybe that is the reason why I do not have the full-blown flu bug. Actually, I do not feel bad at all. So until I no longer test positive for the flu, I cannot have contact with Barrett.

This is very hard for me right now. I have never been away from Barrett this long and I need her now as much as she needs me. According to the Grandmothers and Neal, Barrett is doing wonderful. She continues to reward us with her toothless grins, she is sleeping and eating well, and continues to play with all her toys. The only thing that makes this easier for me is knowing that Barrett has no concept of time and she does not know that it has been days since I have been with her. Barrett and I have had many phone conversations and they tell me that she smiles when she hears my voice. Barrett when you read these journals one day, I hope you know how hard this was for me to be away from you.

I know many of you are more interested in Barrett’s health than mine so I will not linger on about me any longer. Barrett will have two more radiation treatments tomorrow and then receive her transplant around 8:30 p.m. Thursday evening. Friday will probably be considered “Day 0”.

Many of you have asked how will Barrett receive the transplant and the answer is that she will receive the stem cells through one of her central lines. The stems cells are smart enough and know where they are to go in her body. When the Lord created us He thought of everything, it still continues to amaze me.

Around “Day 10” is when the radiation and chemo will catch up with Barrett. She will have no immune system at this time and they tell us that she will be very sick with the mucositis. Remember this can be very life threatening when she develops this. As adults and older children we know how to get rid of this mucus, an infant does not. This mucus can get very thick and it can make it hard for them to breathe, when this happens an infant will probably have to go on a ventilator and back into the ICU. Please pray that Barrett does not get this mucositis as bad as they are anticipating. I know that I have repeated this several times, in her last updates, but I cannot stress enough how devastating this can be for Barrett.

The Doctor has warned us that sometimes when an infant goes on the ventilator, after developing mucositis, that their chances of survival become very slim, getting them off of the ventilator is sometimes very difficult and not successful.

If Barrett gets through this without having to go on to the ventilator, she should start making her own blood products around “Day 14 through Day 21”. Please pray that this will happen sooner than later. Once she starts making blood products, the sooner she will recover from the mucositis.

The Doctors are still amazed with how well Barrett is doing. She has not gotten sick from the chemo and the radiation. The Lord continues to answer all of our prayers. I have a story to share with you on how the Lord is always working in our lives. Tuesday, while I was home and not feeling so well, I was looking in the pantry for some soup. Of course, there wasn’t any and 15 minutes later a friend called and stated that she had made me some homemade vegetable soup the night before and could she bring it by the house. My only thought was that the Lord was taking care of my needs at that time.

To my friend that left the package that included the “encouragement hanky”, I want to thank you. That was so sweet of you to make this for me and I will treasure it always.

Please continue to pray that Barrett will have a full recovery.

Mom

Please pray that Audrea will have a quick recovery as well. - Amie Joye

Wednesday, December 17, 2003

4:00 pm - Barrett had her radiation treatment this afternoon. She has two more tomorrow. She continues to do well and has still not gotten sick. The doctors are pleased with her progress.

Please pray for Mom. She has the flu and is off-limits to Barrett until her flu tests come back negative.

Please continue to pray for Barrett to do well and that she will have minimal mouth sores. Also, remember to pray for her donor.

Amie Joye

10:30 am - Good Morning Prayer Warriors! Barrett is still doing well and she has not gotten sick from any of the treatments. All of our prayers our being answered. Keep up the good work, Prayer Warriors.

The blood drive was a huge success. We appreciate everyone who came out to help.

Please pray for Mom to get well from her cold so that she can see Barrett soon.

Barrett has 1 radiation treatment today and 2 more tomorrow. Transplant is still scheduled for tomorrow. It will probably happen pretty late tomorrow night.

Please continue to pray that Barrett will have few or no mouth sores. Also, remember to pray for the donor and that everything will go well with her procedure tomorrow. Mom will try to update us later.

Amie Joye

Tuesday, December 16, 2003

3:00 pm - Audrea called in with an update. Barrett did fine with her morning radiation. She has still not gotten sick from the treatments and continues to play and giggle.

Unfortunately, Mom has gotten sick. She is on her way to the doctor. She will have to get an antibiotic and wait 24 hours before she can see Barrett.

Mom also sends a special thanks to all who donated blood today.

Please continue to pray for Barrett to have a full recovery and for Mom to get well soon.

Amie Joye

7:45 am - Good Morning Prayer Warriors! I am writing this update on Monday afternoon.

Barrett has just finished her second round of radiation today and she is doing well so far. She has not gotten sick and I pray that she continues to do well.

Today, Barrett will receive radiation twice, one at 8:30 a.m. and another about 3:30 p.m. Her appetite has tapered off but she is still tolerating her foods well.

Barrett is already starting to feel bad from her chemo and we are trying to treat her with Benadryl for now. Eventually, we will probably have to start giving her morphine again.

Please continue to pray that Barrett will have a full recovery and that she will not get mucositis as bad as the Doctors are expecting. Sorry for the short update, I will try to have another update by Tuesday afternoon.

Mom

Monday, December 15, 2003

Good Morning Prayer Warriors! We had a wonderful weekend. We are all settled into our home away from home. Barrett has done very well with her chemo so far and will start radiation today. She will have one treatment this morning and one this afternoon.

We have been very busy with Barrett this weekend. We have to change her diaper every hour during the day and the nurses change her diaper every two hours at night. The purpose of this is because of the high dose chemo, it is in her urine and if it sets on her skin, it can cause her skin to get very irritated, this we do not want to happen.

We are also having to swab her mouth, with a special solution, after every bottle. This is to help with the mucositis. This is the sores that she will get in her mouth and GI tract. This will probably start to get bad sometime between Christmas and New Years. That is when the chemo and radiation will catch up to her body and remember, this is very painful. She will probably not want to eat. The purpose of the swabbing is to help with the mucositis and hope that it will not get as bad as expected. Remember, she will not have any white blood cells and when she starts making her own blood products this will clear up.

If the mucositis gets very bad, since a baby does not know how to get rid of this extra mucous, it can start to cause a problem with her airway and due to her airway already being small because she is an infant, this is were she could have to go on a ventilator. This we do not want to happen, so every effort that we take to prevent this is the best treatment we can give Barrett.

Please pray that Barrett's mucositis will not get as bad as expected and that she will not have to go on a ventilator. If Barrett has to go on a ventilator she will have to be in the ICU. This could be a very bad thing to happen because we may never get her off the ventilator once she goes on it, this is how serious this mucositis can get.

Please pray that Barrett will have a full recovery.

Mom

Friday, December 12, 2003

1:30 pm - Good Afternoon Prayer Warriors! Well, we are home. I should say our second home but the minute we entered the hospital room, I felt as if we were home.

Barrett is doing very well and as I have said before, I believe Barrett can adjust to any place as long as we are there with her. She does not seem to miss sleeping in her own crib. Unlike me as a child, I wanted my own bed and did not want to sleep in an unfamiliar place.

Barrett is to start receiving chemo at 1:00 p.m. today. Please pray that she will not get sick from the chemo. I already have her room decorated. It is like we never left. She even has a small Christmas tree in her room and we have Christmas Songs playing softly in the background.

Brother Roger has already been here this morning to pray for Barrett. What a blessing your Church Family is. For those of you who do not have one, I welcome you to attend First Baptist Church of Clarksville and let us become part of your extended family. I cannot imagine going through this without my Church there to support us with what we are going through. They are a great source of strength for me and my family.

Neal and I have just finished watching the video for the Children's Hospital. This was the video that me, Neal, and Barrett were in along with Devin Proctor, from Clarksville. Let me tell you, when they said have the Kleenex ready, I thought it cannot be that bad but Neal and I have just balled our eyes out. Devin did a wonderful job and he is one of the sweetest little boys I think I have ever come into contact with.

I have been reading many of your emails from the last couple of days and I appreciate everyone of them. My computer is not allowing me to reply to any for some reason. Hopefully, this will be corrected soon. I miss not being able to respond.

Please pray that Barrett will have a full recovery.

Mom

Thursday, December 11, 2003

7:45 am - Good Morning Prayer Warriors! As I write this, it is very late on Wednesday night and I find my heart full of anxiety. Barrett is doing wonderful and she had her first Christmas tonight. She found much joy in the wrapping paper and cared less for the material things. It is a shame, as adults, that we do not share the same joy and seek happiness in things other than material items.

I still do not have any word on Barrett’s MRI and we are to return to clinic this morning to complete some things before we go back to the hospital on Friday. Barrett has grown and developed so well at home and there is a part of me that dreads putting her back in the hospital and have her take two steps back. I have to look beyond this dread and know that the Lord will take care of this as we take one day at a time.

It is so hard to believe transplant time is almost here and this is the part that I am so ready to get behind us. I will be strong and happy for her so that she may feed from my emotions. I am still amazed at how strong of a child she is and wonder if I could ever be as strong as she has been?

As we prepared for bed, Barrett was full of giggles, but it was not long after that that she was ready to lay her head down into her favorite cuddle spot. As she lay in my arms, sleeping soundly, I look at her and wonder how Neal and I ever created someone as beautiful as Barrett. As I carried my beautiful child to bed this evening I looked at her and whispered “Please do not leave me, please do not leave me. I love you with all my heart and I would be so lost without you in my life”, and then I kissed her pretty pink lips. I know she does not hear her mother’s cries for her but I know now she knows that I love her.

Barrett has shown to be such a happy baby and knowing this, I know she has felt love and comfort from all of us. She is my blessing and she continues to be our little messenger from God.

I am very weak now as the nighttime hours creep by and it gets worse when we are in the hospital. Please pray for our strength and that we may seek some comfort in the nighttime instead of dread. I know the Lord is watching over us and he continues to keep his healing hand on Barrett.

For all you new mothers out there remember a mother’s intuition is a very strong thing and you should always go with it. The Lord has blessed you with this and go with your heart. If I had not gone with mine Barrett would not be here today. I feel that it is time to share my journey.

Barrett was born on May 25,2003, and she was delivered by C-Section. She had the prettiest skin color, perfect head, and the prettiest pink lips. We were given all signs that Barrett was healthy.

Prior to Barrett’s two-month check up, we had to go in for an unscheduled check-up because Barrett’s legs from her knees down had a marbled look to them. It looked like someone had bruised her little legs. Barrett’s weight was above average and the PA teased Barrett about having a healthy appetite. The diagnosis was that it would go away and the name of what they said it was is to complicated to mention. Of course, her condition cleared in a couple of days and we did not give it another thought.

At her two month check up, Barrett received another good report. She was meeting her developmental milestones, gaining weight, received her shots, and her pediatrician mentioned that Barrett was very fair skinned and he explained for us not to be alarmed when we would see every little mark on her. Barrett had started developing a grunt at this time and we mentioned this but there was no understanding as to why she was doing this. We assumed she was starting to develop this as a habit.

A couple of weeks later, after waking from her nap, one of her eyes was swollen. This had happened two days in a row and they asked that we come into night clinic. During the visit I also showed the Doctor on call a place on Barrett’s back that looked like a bruise and this Doctor did not seem to think much about it. Barrett was diagnosed with an upper respiratory problem. At this visit, Barrett did not have the weight gain that she had been having and I asked if they were concerned about that and they said no.

Barrett at this point and time was still a very happy and growing baby, but the grunts were starting to get worse. I would inquire with my friends, “did your child grunt?” and some of them would say “yes” and some would say “that is just her expressing herself”.

So as I continued to see my daughter every day, I did not notice how pale she was getting but I did start to get concerned that she did not appear to be gaining weight like she had in the beginning. Barrett has been a child that from the moment she was brought to me has always had a wonderful appetite. I knew that she was still eating very well and every thing else was functioning properly, so why was she not gaining weight? Her four-month check up was less than two weeks away so I figured I would discuss the grunting and the weight problem at that time.

As time got closer to her four month check up, I started noticing that Barrett was not smiling anymore, the grunting was getting to be every other breath, and she was crying when we changed her diaper and picked her up. Barrett’s appetite continued to be very healthy but without any weight gain. I kept telling myself that I was not going to be that worry wart mother and I would wait for her four-month check up.

On September 15, 2003, as I sat in the dentist chair, I kept thinking about Barrett and that something just did not seem right. By the time I left the dentist office, something told me to call her pediatrician. When he returned my call and I explained my concerns and he asked that I bring her in the following day. And that is the day that my world changed forever. If you ever wanted to know what it feels like to be warm water spilling on the floor, I know now what it feels like.

I am grateful for Barrett’s pediatrician, Dr. Moore, for being so attentive, and I am so grateful for the Lord blessing me with mother’s intuition because had I not called when I did, Barrett would probably not be here today. I have joked with Dr. Moore now that every time Barrett sneezes, he will get a phone call from me. I no longer care if I am a worry wart were my child is concerned.

The reason for Barrett’s grunting was that her blood had very little oxygen in it due to her white blood cell count being so high. The grunting helped to expand her lungs so that she could breath easier. The crying from when we picked her up, was obvious now, she hurt. The paleness was due to her being anemic.

My concern is if Barrett had not gone to the doctor that day and would have been at home that night and stopped breathing, it may have just been diagnosed as SIDS. Mothers know their children better than anyone else and that means you know them better than the doctors also.

Please continue to pray that Barrett will have a full recovery.

Mom

Wednesday, December 10, 2003

Titans Future Cheerleader

1:00 pm - Audrea is home with Barrett today, who is still doing fine. They are packing for their return trip to the hospital. Tonight, the immediate family will celebrate Christmas with Barrett.

Preliminary results of the MRI show everything is stable. The radiologists are still studying the tests. Audrea will let us know when they release the final results.

Amie Joye

Personal note to Barrett

To the love of my life. As we prepare for your first Christmas, I apologize that I have not written in so long. You have changed in many ways since I wrote to you last. You have now found your feet and you are trying to sit up. You have even rolled over once. As you have tried many times to do this again, it only seems to aggravate you when you do not succeed. I know you will do it again when you are ready.

You talk to us non-stop and it is amazing the love that I see in your eyes when your father enters a room. Your whole face lights up when you see him and you watch every move that I make when we are in the same room together. I so often wonder what you are thinking and wonder if you love us as much as we love you and then you reward us with one of those amazing toothless grins and I know no one can take our place. We have enjoyed this time at home with you in between your hospital stays and I so look forward to bringing you home healthy.

I cannot tell you enough how proud that I am of you and how much I have enjoyed this time with you when otherwise I would have been at work. You are no longer breastfeeding and I will always cherish that time that you and me spent together. It is an amazing feeling knowing that I was your only nutrition and that the Lord blessed me with such a beautiful experience and bonding time with you. No one else in your life has shared what we have shared together.

Things that I enjoy watching you do are during your 3:00 a.m. feedings, how you constantly rub your eyes with the back of your hand. And when your bedtime comes how you and I cuddle and once you find your cuddle spot, you go right to sleep. We do this every night and I would not trade this for the world. And I especially love all our small talk. You have the sweetest voice and I enjoy every minute of what you have to say. It tugs at my heart when we are cuddling and you push up to look at me with those big blue eyes and you whisper something sweet to me. This I never want to forget.

I hope you never remember the time you spent in the hospital but one thing for sure is that you touch everyone’s heart that you come in contact with. Everyone always comments, “Is she always this good?” You are an amazing baby and the Lord made you to my order. He continues to answer my prayers.

I have read to you the story of Baby Jesus and I plan for this to always be a tradition that you, your father, and me share every year. As we always get busy with the Season, it is important that you always remember the Reason for the Season. As your mother, I will never let you forget the purpose of Christmas. And as Mary treasured up all things and pondered them in her heart, I as your mother do the same.

Love,
Mom

Tuesday, December 9, 2003

11:20 am - Good Afternoon Prayer Warriors! We had a very long day yesterday at Vanderbilt and we are anxiously awaiting the results from Barrett's MRI. I will post those results as soon as I receive them. Barrett continues to do well and she is still enjoying her time at home.

When Barrett arrives at the hospital on Friday, she will start receiving chemo that day. She will have another treatment of chemo on Saturday and she will not receive anything on Sunday. The next four days she will start radiation, twice a day, and will receive the transplant on Thursday.

To explain how some of this works, the day Barrett receives transplant will be "Day 0". Everyday

after "Day 0", for example will be "Day +1", "Day +2" ....... The Doctor feels that Barrett will start getting very sick at "Day +10", that is when the chemo and radiation will catch up with her. Please pray that Barrett will not get as sick as they have anticipated. One thing the Doctors are going to try to do to help Barrett heal quicker is start giving her a neupogen shot on "Day +1" and every day after that for some time. This shot is the same shot that I was giving her at home and it helps build her white blood cells and her other blood products. Remember the radiation and chemo will kill off all of her blood products in her body (white blood cells, platelets, etc.) and the sooner she starts making these blood products, the sooner her body will heal.

The Doctor has stated that if we can make it to "Day +21" and not have been on the ventilator and have not been to the ICU, he stated that he will feel very good about Barrett and that "we may be out of the woods" and that there is a possibility that we will get to leave the hospital with Barrett and go to the Ronald McDonald House around "Day +25 or Day +30". We cannot be more than five minutes from the hospital once we leave there with her. We probably will not get to bring her home until "Day +100".

Please continue to pray that Barrett will have a full recovery and will not be as sick as the Doctors are anticipating.

Mom

Monday, December 8, 2003

Merry Christmas!

8:00 am - Good Morning Prayer Warriors! We had a wonderful weekend at home and it will be our last for some time. Barrett is continuing to do well. Her test results from Friday show that her heart and kidneys are functioning as they are supposed to and have not received any damage. That was wonderful news just as the news that Barrett is in remission.

Someone stated that I did not seem very excited; I guess I am cautiously excited, and I also felt that the Lord would get us to this point. So in a way I was not surprised. I knew that I would have to accept the news whether she was in remission or not in remission.

Today, we go for an MRI of her head and spine. The purpose of the MRI is to get a base line and also to see if there has been any improvement from her strokes. Please pray that Barrett’s brain continues to heal and that she will not suffer any more seizures.

We have to attend clinic one more day this week and that will be on Thursday to prep us for readmitting Barrett to the hospital on Friday. We still do not know where the bone marrow will be coming from, whether it is international or in the states, so the transplant will either happen late Thursday the 18th or very early Friday morning on the 19th.

As the Doctor explained to me that I could send the donor mail, he reminded me that she is not getting paid for this and that she is doing this on her own free will. As my eyes clouded with tears, I could not think of a better Christmas gift. If any of you are wondering if I have written to the donor yet, the answer is “no”. I am grouping my thoughts together and I want to say all the right things to let her know how thankful that I am for her wonderful gift. When I write to her I cannot give any information about where we live or our names and we can meet her one-year from transplant if all goes well.

If any of you are at Vanderbilt, the House Organ December issue came out Friday and Barrett’s picture was in the magazine. She and eleven others were chosen to appear in the Vanderbilt magazine. What an honor!

I am very excited when I see many of you out and you tell me how much you enjoy the journal. That means so much to me because this journal is my therapy. Sometimes when I start writing I am very down and by the time I am finished I have a whole new outlook. Thank you for allowing me to share my thoughts with you and for caring about Barrett.

Please continue to pray that she will have a full recovery.

Mom

Friday, December 5, 2003

Sacked Out!

3:00 pm - Good Afternoon Prayer Warriors! We've had another prayer answered. Barrett is in remission. We are still waiting to hear more test results but I wanted to pass this along. Please continue to pray for Barrett's recovery.

Amie Joye

8:15 am - Good Morning Prayer Warriors! Today is a busy day. Hopefully, we will find out that Barrett is in remission and she has her heart and kidney function test today. I also will be responsible for signing several consent forms regarding the transplant. After speaking with the transplant nurse about the detail of the consent forms, I am suddenly very scared.

Neal and I have made the decision to continue to go forward. We know that if we don’t, we will definitely lose her. Her disease is so aggressive it will come back without the transplant, it may come back with the transplant but at least we will know we did everything possible. While the nurse was discussing the consent forms with me and she stated “liver, kidney, lung, and heart failure and even possible death”, my heart sank.

If any of you could see Barrett and how she is interacting at home, you would say, “This child does not appear sick”. She is happy, trying to sit up, and she has even found her feet this week. I cannot say it enough but I have been blessed with the perfect baby. I know as parents we all feel that way about our children and that is called “unconditional love”. I cannot imagine my life without her and I do not understand those who do not want to experience the joy of parenthood. I would give everything that I own for my child and as any loving parent, I would give my life.

What I still find so amazing are the children who are praying for Barrett. When I was leaving for work yesterday, I saw a very special friend and her family parked in front of our house. The mother stated that her son wanted to see where Baby Barrett lives. He is no more than three or four years old and it tickled him when I asked him if he would like to see Barrett through the window. I know that he felt this was a treat for him but his mother will never know what a treat it was for me. It made my day that this little boy cares so deeply for my child and his parents are raising him in a wonderful Christian home. We have truly been blessed by their friendship.

I need to mention that many families have expressed that their children pray for Barrett every night and I do not want to offend those families by not mentioning them because I have been deeply touched by every word everyone has wrote to me. It is just that I am at such a low at this moment and the look on that little boy's face when he saw Barrett is still burned in my memory.

Many of the adults continue to touch my heart with their kind and encouraging words but the prayer and concern of a child touches me deeply. There love is pure as snow. As I am coming to an end of this message, I am emotionally better. It is time to pick myself up and remember God is in control. I cannot change what is to happen. Someone asked me today how this has affected my faith and my answer was, “I am not a perfect Christian but my faith has not be shaken. It is as strong as it has ever been”. As I have stated before, I may not be sitting on that church pew every Sunday but my faith has always been this strong. I guess I realize I have another blessing in my life, my parents raised me in a Christian home.

Please continue to pray for Barrett to have a full recovery.

Mom

Wednesday, December 3, 2003

Happy Thanksgiving!

8:45 am - Good Morning Prayer Warriors! Great news! Preliminary results from the Bone Marrow test show no signs of leukemia. Further testing of the bone marrow is still needed to determine that Barrett is in remission and we should have that information on Friday. Many thanks to Barrett’s Prayer Warriors, thank you from the bottom of this Mother’s heart.

Tuesday was a very informative day and a very special day in that we see how the Lord has answered many of our prayers. We heard from the Transplant Doctor that the donor passed her physical and she is due to donate on Thursday, December 18, 2003. Barrett will be readmitted Friday, December 12, 2003, and she will start receiving chemo that very day. She will have two days of chemo, one day off then she will have four days of radiation twice a day.

Barrett will receive the bone marrow the same day that the donor donates her marrow. All we know about the donor is that she is 26 years old and has never been pregnant. We will have a chance to meet the donor (if the donor chooses to meet with us), one year from transplant date and only if Barrett survives. I pray that I will be able to meet the young lady who will save my daughter's life.

Of course, we all know everyone loves babies, but Barrett touches everyone’s heart that she meets. She melted the radiation doctor’s heart on Monday and her transplant doctor keeps threatening me that he is going to take her home. She is my blessing and this I cannot mention enough times. I have never been angry at Barrett for being sick, I know this is all part of God’s plan.

We are all dreading going back to the hospital but at the same time we miss our extended family (Barrett’s nurses). They are such a big part of our life and they have been so good to all of us. Everyone who has been at Vanderbilt during the Christmas Holidays say that it is very special. Every day that I go to clinic I realize how blessed I am and that Barrett’s illness could be worse.

Please pray that the donor will successfully be able to donate on the 18th of December and that she and Barrett will remain healthy. Also, please pray that Barrett will not get Graft Versus Host Disease and that she will not have to go on a ventilator and back to ICU. These next few weeks are very critical and Barrett will be in a lot of pain. Please pray that Barrett’s mouth and GI tract will heal quickly from the chemo that she is about to receive. Once again we will be faced with mouth sores and it will be worse than we have already seen.

The Lord continues to bless me with the strength to carry on everyday. I am not ashamed to laugh and be happy. Whatever happens, I know life goes on and I want more than anything for Barrett to be the largest part of my future. I will accept whatever happens and I hope that Barrett has managed to save one soul through this journal. If that is the purpose of her illness, I know it was worth every bit of pain that we all have gone through.

Please continue to pray that Barrett will have a full recovery.

Mom

Tuesday, December 2, 2003

This should have been posted Sunday. Sorry!

7:45 am - Good Morning Prayer Warriors! We had a wonderful Thanksgiving! I hope you all had the same. Barrett has a very busy week. We go for measurements tomorrow so they can make her a cast for her when they do her radiation and we also go for a base line hearing test.

Tuesday we go for her bone marrow test and a spinal tap. Please pray that she will be in remission. We all will be sitting on pins and needles until we here the news from her tests. Friday we go for her heart and kidney tests. This test will see if those organs will be able to handle the transplant.

We still have not heard about the donor's physical and we hope this news will come soon. Please pray that she passed her physical and that we will continue to be able to proceed.

Barrett is doing wonderful. She changes everyday and if it were not for her feeding tube and her two central lines, you would not know she was sick. She entertains us every minute of the day and continues to develop and meet her milestones.

We have started having second thoughts about the radiation because that and the high dose chemo she is about the receive is going to make her very sick. When you look at her now and she is normal, it is hard to know that we are going to pull the rug out from under her in less than two weeks. We have discussed these second thoughts with her Doctors and they remind us that this is going to help her, even though it is going to make her sick. That is a big pill to swallow because they keep reminding us that "we are doing things for her. The day we start doing things to her is the day that we stop". I have to trust that this is the right decision and that God will continue to bless the Doctors with the wisdom and knowledge to treat our daughter.

I still receive many emails from you and I enjoy each one of them. They are very encouraging and give me the strength to continue on. Barrett has truly been a blessing and I look forward to the day when some of you can meet her.

Please continue to pray for Barrett and that she will have a full recovery.

Mom

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