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Barrett Thomas Harris daughter of Neal and Audrea Harris granddaughter of Wanda Harris & Teddy and Janie McCain Born May 25, 2003 |
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Barrett was diagnosed with acute lymphoblastic leukemia on Tuesday, September 16, 2003.
Update Friday, January 30, 2004 (Day +43) 7:45 am - Good Morning Prayer Warriors! I have so much to say that I hope I do not leave anything out. The last several days have been very frustrating for me and I finally feel as if I have some answers. First of all, to give a little more information about what has been going on for the last several days. We still do not know if Barrett has a fungal or viral infection and we probably will never know because her cultures never grew anything. The spot in her lung would have to be removed to see what kind of infection it is and the blood work sent to the CDC to test for a certain type of fungal infection showed up negative. Remember, there are many different types of fungal infections and so far a fungal infection has not shown up in her blood. The spot on her lung could be viral or fungal and the reason it does not show up in her cultures is because it is not in her blood stream. The surgery to remove the spot in her lung would be major surgery and due to the spot being the size of a pin head it would be very hard to see, even under a scope during surgery. Neal and I have expressed that we do not want to do this surgery unless it is absolutely necessary. They continue to give her antibiotics, especially a type of antibiotic that treats fungal infections, just in case this is a fungal infection. As I mentioned before, I have been giving her Diflucan at home and this in an anti-fungal medicine but it does not prevent every fungus know to man. So now that I have tried to bring you up to date, Barrett's fevers are know considered to be low-grade. She has not had a temperature over the last 24 hours higher than 100.6. The Doctors feel that clinically Barrett is doing better and they think the antibiotics they are giving her are helping. But unfortunately Barrett is not doing better, she is feeling much worse. I am going to stress to all you new mothers, please pay close attention to what I am about to say. You, and only you, know your child and you know your child better than anyone. Never let a Doctor intimidate you and make you feel as if you do not know what you are talking about. I cannot stress this enough. One thing I can say about all of Barrett's Doctors and that is they practice listening to the Moms. They truly believe in a Mother's intuition and you should always believe in yourself, especially when it comes to your child. Now to get to my point, Thursday Morning, when Barrett's transplant Doctor came in to talk to us during morning rounds. Me and my mother expressed to him that Barrett was feeling worse and that we felt that her stomach was bothering her and her rash appeared to be back. Just to refresh you, Graft Versus Host Disease (GVHD) can attack the gut, skin, and other organs. Once we convinced him that Barrett was hurting and that she was getting worse instead of better, he expressed to us that it appeared Barrett was having some GVHD and that it may be in her gut and they may do a biopsy of her stomach to determine if that was the case. They were going to monitor her all day and then make a decision on whether or not do this today. All day yesterday, I watched my child feel worse and worse and I knew something was not right. If I have not mentioned before Barrett has three anti-GVHD medicines and they are Cyclosporine (most important medicine, given by mouth, and looks like Wesson oil), Cellcept (given through feeding tube), and Predisone (given through feeding tube). These three medicines are very important and every couple of days, they run a Cyclosporine level on Barrett to make sure those levels are where they need to be in her blood stream. For about a week now her levels have been really low and we thought we figured out why a couple of days ago and that was because she was receiving a generic brand of Cyclosporine instead of another brand that she was supposed to be receiving. You think what does it matter, but trust me in this case, it does. Unfortunately, this did not fix the problem, her levels keep going down. Well, as I was about to leave for the evening, because Neal's Mom was staying the night, I found myself not being able to leave without talking to the Doctor. I kept waiting for him to come back onto the floor and finally after I pestered her nurse long enough, she paged him for me. You know how you hate to be a pest but sometimes something just keeps pushing you to be one. That Hand on my back doing all the pushing was the Lord reminding me once again to listen to that inner voice. The Doctor came to Barrett's room, pulled up a chair, and listened as I said, "You have got one frustrated mom on your hands and I am not frustrated at you". I explained to him that I did not understand how her Cyclosporine levels could be getting lower because I knew she was receiving those medicines three times a day. He explained to me that there wasn't anything that I was doing wrong and that he just could not figure it out himself. We continued our talk and he stated that he is giving her the same dose three times a day that he would be giving an adult twice a day. We were all clueless but something kept telling me it had to be much simpler than that. The more we talked the more he stated that he thought her metabolism was burning it up and that was still not good enough for me. So we started going through all her medicines again and as he pulled out his palm pilot to see if Phenobarbital (anti-seizure medicine) could be reacting to the Cyclosporine, we had our answer. The two medicines do not work together and the Phenobarbital eats up the Cyclosporine. What a relief, finally an answer to one of my daughter's problems. The Doctor then checked to see if Cellcept and Phenobarbital worked together and they were o.k.; I then asked him to check Predisone and he stated that one was o.k. but he would check anyway. And guess what Phenobarbital also eats up Predisone. Two of her most important medicines, the ones that are saving her life, were having an interaction with her anti-seizure medicine. So her Doctor and I both learned something, I learned to push and push until I was satisfied and he learned that Phenobarbital does not work with some anti-GVHD medicines. I cannot say why this was not checked on before. The important thing is we know now and we have hopefully kept Barrett from getting a serious case of GVHD. They are currently giving her Cyclosporine through I.V. instead of oral until we can get her levels back up. We hope to see her feeling better in the next 48 hours. With the Lord in control and her Prayer Warriors on her side praying for her infection to clear up and the GVHD to be cured and for her to regain her appetite, I feel as if I may have a happy little girl back within the week. They are not going to do the biopsy of her stomach, unless she does not improve over the next week. I feel that we will see improvement. As I explained these events to my family and they told me how proud they were of me for sticking to my feelings that something was not right and for her nurse telling me what a wonderful mom I am. I would be nothing without the Lord, He is who gets me through this everyday, He is who is in control, and He is who made me stay there until I talked to her Doctor. I do not deserve the credit and I give it all to the Lord. If I have not mentioned it in a long time. Barrett's nurses are part of our family, I have made many wonderful long-time friendships, and I love each one of them dearly. I hope they know how much they mean to me and my family. I received a phone call from one of her nurses last night to tell me she had just been engaged. I was so happy for her, I could have cried. They don't make them any better than her fiance and just the fact that she wanted to share this with me, before she had with so many others, reminds me that her nurses are our family and without them that hospital room could become unbearable. Please continue to pray that Barrett will have a full recovery. Mom Thursday, January 29, 2004 (Day +42) 11:15 am - Good Morning Prayer Warriors! The Doctors have just been in and there is still no answer for Barrett's low grade fever. Barrett is not feeling well. It seems her stomach is bothering her and she is vomiting a little bit. If she continues to vomit any more today, they may do a stomach biopsy to see if it is GVHD flaring up. Barrett is getting a little bit of rash which may also be a sign of GVHD but they will keep an eye on it for now. The bloodwork results may come back from the CDC today which will determine if Barrett has a fungal infection in her blood. They continue to give her the antibiotic to treat the fungal infection if that is what it is. They still don't know if it is viral, fungal, or GVHD. Please pray that Barrett will feel better soon and that whatever she has will go away and not come back. Please keep praying that she will regain her appetite. Amie Joye
Tuesday, January 27, 2004 (Day +40) 11:45 am - Hello Prayer Warriors! They are holding off on Barrett's surgery for her infection due to it being a major surgery. The infection is so small that it will be hard to find by a scope. Please pray for the right medications to cure the infection. By Friday or Monday, they will repeat the cat-scan. We hope it will show some sort of improvement in the infection. They will give her a blood transfusion today. She has been a little fussy and they hope this will make her a little less fussy. Please continue to pray for Barrett's fever to break along with the infection to go away. Please pray that she will start eating again as well. Amie Joye 8:00 am - Good Morning Prayer Warriors! Can you believe it has already been 40 days? We hope that we have finally found out what is wrong with Barrett. Her cat-scan showed a place in her left lung and they believe it may be a fungal infection. The only way to determine that it is fungal is for Barrett to have surgery. We are waiting for her surgeon to look at her cat-scan to determine if he thinks it should be removed. They have started treating her with an antibiotic that fights fungal infections. She was already on Diflucan but it obviously did not prevent this type of infection, if that is what it is. She continues to be doing very well and the Doctors still remind us that this is all a part of her treatment. These are the types of bumps in the road that you hit and there was nothing that we did to cause this. I am just glad to know the source and know we can treat it and move forward. We also found out on Monday that Barrett's bone-marrow is 96% donor and 4% Barrett. That is good news, by Day +100 we want Barrett to be 100% donor. Please pray that this number increases instead of decreases. There is always the small possibility that she could start rejecting the donor's marrow. We continue to get wonderful news and all our prayers continue to be answered. Thank you so much for you concerns and prayers. Please continue to pray for Barrett's appetite and that she will have a full recovery. Mom
Monday, January 26, 2004 (Day +39) 10:00 am - Good Morning Prayer Warriors! We are still at the hospital where Barrett has ran a fever all weekend. It goes from as high as 103 to 99 and her cultures still have not grown anything. They are going to do a cat-scan this morning to see if they detect a fungus infection in her chest area, sinus area, and head area. We, along with the medical staff, are very anxious to see what is going on. They continue to tell us that this is all normal and that they are not overly worried. All Neal and I want are some answers as to why Barrett continues to run fever. She continues to play when she is awake but she continues to sleep a lot. She is maintaining her weight and she continues to be off her TPN's and Lipids. She still does not want to eat and we hope that when she feels better maybe she will regain some of her appetite. I continue to appreciate all of your prayers and concern. I continue to ask for your prayers. The Lord continues to work in our lives and without Him, we would be lost. I can not imagine going through this without my faith. Please continue to pray for Barrett and that she will have a full recovery and beat this infection, or whatever it is, and not have any more problems. Mom
Saturday, January 24, 2004 (Day +37) 2:30 pm - Good Afternoon Prayer Warriors! We are still in the hospital after being readmitted at 2:45 a.m. Friday Morning. Barrett was running a 102.2 fever and she still continues to run fever. The Doctors are not too concerned. They have her on three antibiotics that she receives through IV that they are treating her with. They strongly feel that she probably has a fungal infection this time. As of this moment her cultures still have not grown anything. They are planning on doing a cat-scan of her head, sinus area, and lungs on Monday to see if any type of infection shows up on the scan. The only way her cultures will grow anything is if she has an infection in her blood. That is why they are doing the cat-scan because if the infection is somewhere other than her blood it will show up on the scan. She continues to not want to eat and we have gotten her up to 30 calorie formula so we have been able to discontinue the TPN's and Lipids. The Doctors are still very pleased with Barrett. They stated that if we were not coming back to the hospital they would be concerned. They said the children that have transplants and do not get readmitted after transplant are the ones they worry most about. Barrett's
blood pressure continues to be a little low, please pray that her
vitals stay normal so that she does not have to be readmitted to the
ICU. Please continue to pray that they will be able to treat Barrett's
infection, that she will regain her appetite, and that she will have
a full recovery. Mom
Friday, January 23, 2004 (Day +36) 9:20 am - Good Morning Prayer Warriors! Mom and Dad had to take Barrett to the emergency room this morning about 2:45 am. Barrett is doing okay and appears to feel well but she is running a fever of 102.2. She continues to run a fever throughout the morning. They will draw cultures and keep her for at least 48 hours. Please pray the Doctors find the source of the infection so they can treat her and the family won't have to continue these visits to the E.R. Amie Joye Thursday, January 22, 2004 (Day +35)
Please pray she will get her appetite back and she will continue to do well. Amie Joye Wednesday, January 21, 2004 (Day +34) Friday, we will find out how much of the donor's DNA has taken over Barrett's. They say that it is still to early for it to be 100%, but we can pray that it is. They will not do another bone marrow test until Day +100. They have three more spinal tap treatments that have to be done before Day +100. The reason for these treatments is because Barrett also had CNS Leukemia (Central Nervous System). We had been told by one Doctor that Barrett did not have this but her transplant Doctor said she did and statistics show that these four treatments after transplant show that the cure rate is better. So that is why she is still receiving the chemo treatments to her spinal fluid. They did not end up doing the skin biopsy because her rash is almost gone. The only place that it still appears is at her stork bite on the back of her neck. They do not do skin biopsies unless the rash covers more than 50% of her body. The Transplant Doctor was very pleased with Barrett at her clinic visit yesterday. Some of the nurses say in their meetings that every other word out of his mouth is Barrett Harris this and Barrett Harris that. He is so pleased with her progress, I credit this to our Lord and His Healing Hand and to all her Prayer Warriors! Once again, thank you from the bottom of my heart. Barrett has not run any fever since Sunday morning and other than itching, she feels and acts pretty good. She is still not wanting to eat but we are playing with food to get her interested. We are working with a therapist that helps give us suggestions to interest Barrett in eating. Right
now, I put cereal on my finger and rub her gums with it, she has developed
aversions to anything being placed in her mouth due to all the mouth
care that we gave to prevent the mouth sores and also from a medicine
that I have to give her by mouth. The cyclosporine has to be given
by mouth and not through her tube due to it sticks to plastic and
this is one of her most important drugs that she receives. It looks
like Wesson oil. We visit the Physical and Occupational Therapist today. Please pray that Barrett continues to regain her strength. I am still trying to get a grasp on this new responsibility of giving Barrett her medicines and sometimes I find myself still in tears. You may not think giving 10 medicines a day may be much but some of them are given three times a day. They have to be given very slow and then flush afterwards. By the time you finish giving medicines, ten to fifteen minutes have gone by. I think I have figured out why I had the flu back in December. The Lord knew I was going to need my rest for what was about to come. I have to say if it was not for my Mom the last two weeks, I do not know where I would be. She is my lifesaver. When we were in the hospital, my mom and Neal's mom would alternate nights with me. We are no longer doing this because her Transplant Doctor wants me to be the only one giving her the medications. My mom has been coming up to help me with Barrett and if it were not for her, I think I would be going insane. Thanks Mom, your the BEST! Also Barrett is still on TPN's and Lipids and she is still receiving feedings through her feeding tube 24/7. Please continue to pray for Barrett's appetite and that she will have a full recovery and no relapse. Mom
Tuesday, January 20, 2004 (Day +33)
Her rash has disappeared and the cultures did not grow anything. It is still a mystery where the fever came from. Please pray that Barrett keeps doing well and that she will start eating again. Thanks for all your prayers and support! Amie Joye Please pray for Barrett to recover, that she will regain her appetite, and the results will be good from her bone marrow test. Amie Joye
Monday, January 19, 2004 (Day +32)
She still continues to run fever and the cause is still not known. During clinic Friday morning, they drew cultures and as of right now they still have not grown anything. They continue to draw cultures whenever her fever gets 100.4 or higher and those cultures have not grown anything either. They are looking to see if the fever could be related to an infection. If it is an infection, the cultures will grow something in 48 to 72 hours. If nothing grows, then we will have to do a skin biopsy on Monday to see if she has Acute Graft Versus Host Disease. As I have stated all week, we have assumed she has had GVHD but we are ruling every possible thing out. The difference in Acute GVHD is this happens within the first 100 days after transplant. You can also develop chronic GVHD which can happen 100 days after transplant. Chronic GVHD can come and go for years, I hope and pray that we never have chronic GVHD. The Doctors are not concerned with Barrett's condition. They say these things are expected, especially around Day +30. All we can do is pray that her problems do not get any worse. If they do a skin biopsy on Monday we probably will not get back to the Ronald McDonald House until Tuesday or Wednesday. I have said it many times before, "a little GVHD is good because it can attack any hidden leukemia cells that may still be hanging around". God is in control, He knows what is best for Barrett and as I find myself being selfish and wanting to leave the Hospital to go back to the RMH, He is telling me, "not yet, be patient". I am able to leave the Hospital for a couple of hours and go to the RMH and when I return to the Hospital I find myself smiling and anxious to get back to my daughter. My heart is where my family is. Need I mention to say that I pray many prayers for strength while I am away from there. Barrett's eyes having been itching her for the last five days and last night they ordered an ointment for her skin and immediately, we could see improvements in Barrett. She has rubbed her little eyes raw as well as her hands, but she is starting to play again and talk. We are seeing signs that Barrett appears to be feeling better. She still does not want to eat and I plead for you to pray that she will regain her appetite soon. Some children do not get their appetites back for several months. Barrett continues to meet developmental milestones and she especially likes to explore with her hands. I am doing a number one no-no which is letting Barrett sleep with me, just so I can get some rest. My day starts very early and my day ends late with her medicines so I am trying to be very strict on my rest time. Some mornings when 4 a.m. rolls around and Barrett starts exploring with her hands and she finds my face or even my hair, my first thought is, "Barrett, mom needs to rest now, go back to sleep" and then I tell myself, "she will not be this age tomorrow and one year from now, she will be to busy to want to touch me, so enjoy and don't be angry, one day you will miss all of this". I love that baby more than I ever thought I could love someone. Someone told me, "You are about to meet the love of your life" and she was right. I would like to mention how giving people continue to be. There was a pastor and his wife at the hospital a couple of weeks ago from Giles County. They saw Barrett's pictures on her hospital door and wondered what was wrong with the baby. I happened to be in the hall visiting with family members and he stopped to make conversation. He gave Barrett an afghan that some women in their church had made and then prayed over the afghan when they were finished making it. When ever Barrett has floor time at the RMH this is what she plays on. I find those gifts to be so touching and I never want to forget the stories behind those special gifts. Please continue to pray that Barrett will have a full recovery, that she will not develop chronic GVHD, and that she will regain her appetite. Mom
Saturday, January 17, 2004 (Day +30) 12:00 pm - Good Afternoon Prayer Warriors! I just talked with Mom. Barrett is still doing well and it looks like they will keep her in the hospital through the weekend. The Doctors are trying to determine the source of her fever. It could be coming from an infection, the GVHD, or the chemo she received on Friday. Please continue to pray for Barrett and for her to regain her appetite. Also, pray that the Doctors determine the source of the fever. Amie Joye
Friday, January 16, 2004 (Day +29) 11:30 pm - Good Evening Prayer Warriors! Barrett is still doing well. However, she has been readmitted to the hospital. She has been running a fever and it appears she has some type of infection. They have her on antibiotics. Mom says that everything is okay though. Please continue to pray for Barrett and that her fever will go away. Amie Joye Thursday, January 15, 2004 (Day +28) 9:30 pm - Good Evening Prayer Warriors! Just a note to let you know what all is going on. Barrett is doing well, however, she still is being affected by the Graft Versus Host Disease. She still has her rash and is still trying to develop a fever. If you remember the signs
of GVHD are rash, fever, diarrhea, and vomiting. She does not feel
very well and I can see her feeling a little worse each day. This
is to be expected but once again I have to stress we do not want it
to get worse. We go for our bone marrow
test tomorrow and we are scheduled for another chemo treatment into
her spinal fluid. They are going to be looking to see if she is still
in remission and to see if her donor's DNA has taken over. I do not know if I have
mentioned this but Barrett's genetics did not change with the transplant
but her DNA will now match the donors. That feels strange to me because
a part of Barrett that took nine months to make has been changed in
less than one month. I need Barrett's Prayer
Warriors very much right now. We have come to far to take two steps
back. I need prayers that the GVHD will start to go away and that
she will start wanting to eat again. Barrett is still receiving her
food and medicines through her nose tube. Her formula runs 24/7 and
she receives TPN's and Lipids for ten hours each now through her IV.
TPN's and Lipids are nutrition that she receives because she is not eating. Once she starts eating again, she can come off the TPN's and Lipids. The reason it is so important that she starts eating soon and come off the TPN's and lipids, is that the TPN's and lipids can cause liver damage if she is left on them for to long. The Doctors monitor this through her labs so they will know if any damage starts to occur. Please pray for Barrett and pray that she will have a full recovery. Mom
11:30 am - Good Morning Prayer Warriors! Barrett continues to do well. She has been trying to run a low grade fever and she has a rash which is part of the GVHD. It is very important that the GVHD does not get any worse. She is still not wanting to eat but all in all she is doing very well. Please pray that the fever goes away, that she regains her appetite and will start eating by mouth again, that the GVHD does not get any worse, and that she has a full recovery. Amie Joye
Wednesday, January 14, 2004 (Day +27) 12:15 pm - Good Afternoon Prayer Warriors! Sorry that I have not written but my hands have been full. Barrett is doing wonderful. She has developed some Graft Versus Host Disease (GVHD). So far, it is not bad enough that we have to be readmitted to the hospital. She has a rash all over her body and I think that makes her uncomfortable. She is adapting well to the move and we may go for a stroller ride later today. I have been giving medicines about every hour to every two hours. She does not receive any medicines between 10 p.m. and 6 a.m. so we are able to sleep all night. She is developing mommy-itis and I know this is only going to get worse. That is alright, as long as she is healthy we can deal with anything that comes along. Yesterday was a bit rough, the first day away from the hospital. All I could do is cry, everything was so overwhelming. I picked myself up and said many, many prayers and told myself it would be better tomorrow and even better the next day. It was kind of like being a new mom again. She is still not wanting to eat by mouth and is receiving feeds through her nose tube 24/7. Please continue to pray that she will want to eat again soon. The teenagers say food taste like metal if that gives you any idea of why she may not want to eat. Barrett is taking a nice long nap right now so I am able to catch up on some things. She has been trying to run a fever and if she spikes one, back to the hospital we go. Please pray that the GVHD does not get any worse, that she will not run any fevers or get any infections, and that she will regain her appetite again soon. I enjoy your emails very much. Sometimes when I find myself down and start reading your emails and then I feel much better. Please continue to email me. Please continue to pray that Barrett will have a full recovery. Mom
10:00 am - Barrett is doing wonderful at the Ronald McDonald House. She has developed more GVHD. Please pray this does not get any worse. She is still not eating by mouth. Please pray for her appetite to come back and that she will start eating again. Please pray for no infection. It is very important for these things to happen. Mom apologizes for not being able to update but she is very overwhelmed giving Barrett her medications. Barrett is taking 11 medications throughout the day. Some are given two and three times a day so it is about every hour that she receives medication. Barrett is doing very, very well. The doctors are still very pleased with Barrett's progress. Please continue to pray hard.
Monday, January 12, 2004 (Day +25) 10:00 am - Good Morning Prayer Warriors! Barrett is doing fine this morning. The family is getting to go to the Ronald McDonald House today. Mom will try to update us sometime tonight or in the morning. It will be a very busy day. Please pray for Barrett to regain her appetite, to tolerate the medications "at home", and that she will not get a fever or infection so she will not have to go back in the hospital. Amie Joye Friday, January 9, 2004 (Day +22) 8:00 am - Good Morning Prayer Warriors! Barrett is doing wonderful. As I write this, it is almost midnight and I find myself very anxious. Neal and I feel as if we have our little girl back. She is still not wanting to eat but hopefully within the week, we will be getting there. She is still doing very well with receiving her medications by mouth and she is doing very well with her tube feedings.There is not much to report other than please continue to pray that Barrett will have a full recovery and that she will regain her healthy appetite. All of our prayers are being answered and as I look back at our long journey, I am continually amazed by what God has done. I know that I should not be amazed because I have placed all my worries in His Hands but I am still human. As a mother, I feel rewarded each time Barrett gives me a toothless grin. I remember before we knew Barrett was sick, I would say to her, "Please smile for me so that I know you love me". It would break my heart when I would receive nothing in return. If there is any advice that I can give a new mother and that is always listen to that voice inside you. That is your mother's intuition telling you something is wrong and only you will know this. Even the Doctors at Vanderbilt believe in a "mother's intuition". They tell the nurses to listen to the moms because their instinct is probably correct. Looking back on those days of no smiles and seeing Barrett smile endlessly now, that is priceless. I know how I feel when she smiles from just seeing me but words cannot explain the expression she gets on her face when she sees her father. Words will never explain that picture, the sun does not shine that bright. To all the Fathers of little girls, regardless of your little girl's age, I hope you know what you mean to us little girls. Another thing about a mother's intuition is that on September 16, 2003, when her Doctor told me she probably had leukemia, I knew Barrett would beat this disease. For those of you who do not know how serious our situation was on that day, here is some more of our journey. Barrett would not be here today if Doctor Moore had not reacted so quickly. Barrett was life-flighted to Vanderbilt and while in the emergency room went into respiratory distress. She was placed on a ventilator at that time to help her with her breathing. She would have gone into respiratory distress regardless of where she was that day, the Lord knew that I could not have handled this at home, so He gave me the instinct to call her pediatrician the day before so that we would have an appointment with him on September 16. I had no idea how close to death my child was, either I was ignoring that fact or I just had the faith that my child was going to be alright. I will always believe it was the later. Prior to leaving the Doctors Office in Clarksville, I had called my father and told him that he was going to have to drive Neal and I to Nashville and I told him, "Barrett is very sick". Before we left I explained to him, "we did not need to rush and to drive the speed limit, that we will do her no favors if we do not arrive in one piece". For those of you who know how the McCain's drive and will find it hard to believe, we did drive the speed limit and we did arrive in one piece. We all remained very calm and said many prayers on what now is called our "Prayer Highway". This was named by a very dear friend of mine who has made this trip many times before during her own family crisis. As I read to my child in the emergency room and saw tear filled eyes of my loved ones and from some of the nurses, I kept telling myself and Barrett, everything was going to be alright. I did not understand why no one else felt as confident as I did. The point that I am trying to make is that our fight is still not over. We have a long and bumpy road ahead of us but this mother always knew Barrett would beat the leukemia and with all our prayers, this is still holding true. Many of you said I cannot get over how calm you are. I was calm because I just knew. Maybe it was my faith and maybe it was my mother's intuition, either way the Lord has blessed me with both. Regardless of what happens, I will keep my promise to God that I will not be angry and I will not ask "why"? As I have said before, "if she just saves one life, I will have to know that this was all part of God's plan and this I will accept". I have to admit there was a time that I think I gave up hope. That was the night that Barrett suffered a seizure. When they readmitted her to the ICU and she seemed so far away from me, the Doctor came to tell me that she had suffered a stroke and that she had some hemorrhaging and I knew no medicine could fix that, for the first time I felt as if I was losing her. When I was allowed to see her again and she was just laying there, I felt defeated. The Doctor had explained to me the damage that she had received and I felt as if we were given no hope. We were told to go and get some rest and come back in the morning. As my father and I packed up her toys and other contents from her floor room and placed them in my car, I remember my mom saying to me, "Don't give up hope". All I could do was fight back the tears. I did not know if she would ever return to her floor room. As I drove Neal and I to the Ronald McDonald House that early morning, I would hit a bump in the road and one of her toys would start playing "You are my sunshine, my only sunshine, please don’t take my sunshine away from me", I would just start crying. By the time we arrived at the RMH, all I could do is lay my head on the steering wheel and cry, "My Baby, My Baby". Neal tried to assure me everything would be alright and I told him that he did not hear all that the Doctors had told me and this time I was not so sure, that I just could not feel anything. But a couple of hours later, the sun came up and when we went to the hospital, I gave orders to not resuscitate and we discussed funeral plans. I do not know if I will ever have a day as hard as that day was and I do not wish that on my worst enemy. As I held my lifeless child and sang to her, I knew she could here me. I prayed very hard that day and the Lord has blessed me with many days since then. I look back and I am sorry that I had a weak moment but from that point on I knew God was in control and that I had to give Him all my worries. That is what continues to get me through everyday. Once again the Lord works miracles because Barrett shows no signs of having suffered a stroke and we continue to pray to the Lord to keep His Healing Hand upon her. On Tuesday night of this week, the night Barrett was so restless and she required being held the whole time, I kept telling myself to value this time and not get angry. Look at her beautiful hands and remember how she loves to cuddle because this time is slowly slipping away, she will not stay little forever. This time, this age, and this priceless moment will be gone tomorrow and unless I write it down it will be gone from my mind also. The purpose of this long story is remember your instinct and always keep the faith. There are things in life that can never be taken from you and one of those is your Faith in God. As Neal and I enjoyed the Toby Keith concert, one of Barrett's Doctors gave us the tickets, once again I was reminded how proud I am to be an American. And I remember the soldiers that are away from us, fighting for our freedom, and one of the great things about our freedom is the fact that we can worship our Lord freely in this Country. Please continue to pray for our soldiers safe return. Please remember the purpose of these long entries are so that I will never forget our journey. Please continue to pray that Barrett will have a full recovery. Mom
Thursday, January 8, 2004 (Day +21) 11:00 am - Good Morning Prayer Warriors! Barrett spent a wonderful night with her Grandmother. She slept through the night cuddled up on Mom's shirt.They have increased the tube feedings and she is tolerating them very well. They continue to decrease the TPN's and hope to have her completely off of them on Friday. She will be taken off one of her IV medications today and will start taking this orally. This will leave only one more medication by IV. Her counts continue to climb up. The Doctors are still very pleased with how Barrett has handled everything. Yesterday evening, Barrett ate a total of a teaspoon of cereal for Mom and Dad. The Food Specialist gave Mom and Dad lots of tips on how to help Barrett with eating again. Needless to say, it was a very, very messy job. If you remember, most kids that have been through these procedures that Barrett is going through, kids say the food tastes like metal. This makes it obvious why Barrett wouldn't want to eat. Mom and Dad were very tickled last night. They feel like they are getting their daughter back. She is playing, rewarding them with many toothless grins, and she is starting some of her old habits again. Please continue to pray for Barrett to have a full recovery. Amie Joye
Wednesday, January 7, 2004 (Day +20) 10:20 am - Good Morning Prayer Warriors! The steroids continue to make Barrett a wild child. Mom had to hold Barrett all night long (not that she minded). She continuously wants to be held by Mom and Dad.The family is planning to go to the Ronald McDonald House on Monday. They are increasing Barrett's nose tube feedings today. They will give one of her IV medications by mouth today with 2 medications left by IV. The Doctors hope by Friday to be able to give Barrett all medications orally. This will give Mom and Dad the weekend to practice giving her the medications. Barrett is still not eating by mouth. Please continue to pray for Barrett's full recovery and that she will begin eating by mouth again. Amie Joye
Tuesday, January 6, 2004 (Day +19) 1:20 pm - Good Afternoon Prayer Warriors! Barrett had a good night last night compared to the night before. The nurses suggested when I was not there at night with her to put a piece of my clothing in her crib so that she could smell my scent. We will see if it continues to work. Her white and red blood cells and platelets have started coming up again.They are going to send in a food specialist today to give us tips on helping Barrett to want to eat again. They say the reason she does not want to eat is because she associates pain with her mouth and anything that goes into her mouth will hurt. She is the funniest thing. Whenever you bring anything close to her mouth other than her pacifier, she closes that mouth and you cannot get anything inside. Babies continue to amaze me; they are smarter than we think. Also, the chemo and the radiation has affected her taste buds. She cannot taste anything but this will improve over time. Barrett continues to tolerate her tube feedings and they have started increasing those and decreasing her TPN's. TPN's is a source of food that she receives through her IV that provides her with fat, calories, and the nutrition that she needs. If she continues to tolerate her feeds and can come off the TPN's, we will still plan to go to the Ronald McDonald House this week. Barrett has to come off the TPN's very slowly; she has to be weaned off of them. We have also found out that once Barrett has finished receiving her last four treatments of chemo to her spinal fluid, the Omaya Reservoir will be able to be removed from her head. Some of you may have noticed a bump on the top of her head and that is where she receives her chemo treatments. If you remember, they had a hard time succeeding with giving Barrett spinal taps so they installed this Reservoir to have access to her spinal fluid. The good thing about the Reservoir is that she does not have to be sedated like she would have to be for spinal taps. Barrett will not be receiving any other chemo to her body, just these last four treatments to her spinal fluid. I reminded Neal and Barrett that one year ago Saturday, January 3, 2003; we found out that we were having a little girl. That is the date that we had our ultrasound and an amnio. We had this procedure done in Nashville, due to the fact that I was considered a high risk pregnancy because of my age. During the ultrasound, they found a heart echo and Neal and I chose to do the amnio to make sure Barrett was going to be alright. Our words were, "we can deal with what we know". During the procedure of the amnio, the Doctor looks at Barrett's position on the ultrasound so that she is in no danger of being stuck by the needle. Of course, Neal and I are watching the whole procedure. When the Doctor inserted the needle, Barrett tried to grab the needle a couple of times. The Doctor commented at that time that we had a feisty and strong-willed child on our hands. I tell you this story because looking back, Barrett has not been anything but a fighter, even before she was born. I would like to take this opportunity to let those of you who have donated money to Barrett's fund, know how that money is being used. I do this because those of you who have given, I feel as if you have an investment in my child. I hope that Neal, Barrett, and I never disappoint any of you that have been so giving to us during this very critical time. Regardless of the amount that you have given, it has been deposited into a fund for Barrett and the fund has been set up in her name. To give you a little bit of future information, Barrett will use that money for upcoming surgeries, medicines, and any other care that she will require. Barrett will not be able to attend a Day Care until she is at least 2 ½ years old or until her immunizations have been completed. She will be on medicines for a long time and due to side affects of the radiation, she will probably require some surgeries in the future. One thing this journal has helped with and that is to provide you with facts and I hope if any of you ever have a question about her fund, please feel free to ask either Neal or myself. Neal and I would never want to cause suspicions that would keep another family from receiving your generosity. The Lord continues to answer all of our prayers and I am truly thankful for all of Barrett's Prayer Warriors! Please continue to pray that she will have a full recovery. Mom
Monday, January 5, 2004 (Day +18)
Barrett is tolerating her feedings through the nose tube but she still cannot take a bottle. This is probably due to the fact that babies who have had bone marrow transplants become lactose intolerant for awhile so the formula they are giving Barrett does not contain milk. When they feed her by mouth, the formula tastes bad. Barrett's blood counts have dropped some from last week. The reason for this is that they are no longer giving her the neupogen shot which helps her to make white blood cells. It is expected for the counts to drop but will only be a matter of time before they start coming up again. It is still the plan for the family to go to the Ronald McDonald House this week. Please pray that Barrett will start taking a bottle, that Barrett will begin to tolerate the steroids, and that the family will get to go to the Ronald McDonald House this week. Amie Joye
Saturday, January 3, 2004 (Day +16) 11:15 am - Hello Prayer Warriors! We are without a computer in our hospital room now and it makes updates a little more difficult. Barrett is doing well, although her stomach still bothers her, she continues to make improvements.She is on one antibiotic
now and she no longer receives her neupogen shot. That was the shot
that helps her make white blood cells. Since Barrett is making her
own blood products, she no longer requires the shot. The Doctors are
still anticipating us going to the Ronald McDonald House sometime
next week. Not much else to report on Barrett other than please continue to pray that her stomach will start feeling better, that she will start wanting to eat again and be able to tolerate her feedings, and that the Graft Versus Host Disease does not get any worse. Her rash is gone and the Doctors feel that her stomach problems are from a little GVHD. I have something to share
with you and I hope that I find the right words to write. I have been
praying for many nights that the Lord would use me to write and that
He would use me to do His Will. I have struggled with writing for
quite some time and I have truly felt at a loss. During the storm
last night, I was awakened by the loud thunder and at that time, I
took a moment to say a prayer and asked the Lord to help me find the
right words to write again, to be able to write from my heart. I know the purpose of this
journal is for Barrett when she is older, I also feel that this journal
allows me to show how the Lord works in our lives, even when things
feel like they could not get any worse. If you were to read my
earlier journal entries, I stated how the hospital room sometimes
felt like it was closing in on me and that I just wanted to run for
the hills, screaming as loud as I could. Well, I have not had that
feeling for quite some time. I could not tell you the last time that
I felt that way. Barrett's hospital room
feels very warm and comfortable and I mean this in a way that is hard
to describe. Many hospital rooms, regardless of the temperature, can
feel cold. Barrett's room has the feeling of love and the feeling
that you are never alone. It has the most comforting feeling that
I have ever felt anywhere. I have always played this
off and told myself, "this is our home and when you are with
your family, you are always at home". Many of you have asked,
"how do we do this?" We do it because Barrett is our child,
our whole world, and as long as we are together, it does not matter
where we are. A loving parent would travel to the end of the earth
for their child. Home is where your family is. I have always said
the nicest compliment Neal has given me was, "You have made our
house a Home". As I sat rocking Barrett
last night, one of her nurses came in and shared an experience that
she had in Barrett's room several nights prior to transplant. This
is the same nurse that handled Barrett's transplant and we love her
dearly. She told me one night,
around 3:00 a.m., she was giving Barrett some of the medications and
saying a prayer for her. She explained that she does this often for
her patients. Once she finished giving Barrett her medications, she
kneeled down on the floor to retrieve something out of Barrett's refrigerator
that is in our room. One of those refrigerators that is low to the
floor and all of a sudden she knew she was not alone. She turned to
see who had entered the room and who was standing behind her and when
she turned around, no one was there. She stated she knows in her heart
that someone had entered that room and was very close to her. I have
not mentioned that Neal and I were asleep eight feet in front of her. Some of you, as you read
this, may think that this is all in our head and that we are grasping
for something, but I know how I feel and no one can change that. I
truly believe how Barrett's nurse felt and I believe her reason for
telling me this last night was the Lord answering my prayer to be
able to write from my heart again. Please continue to pray
that Barrett will have a full recovery. Mom
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