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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 Sunday, February 29, 2004 (Day +73) 10:30 am - Hello Prayer Warriors! Barrett has had a wonderful weekend. Her two bottom teeth have cut through her gum line and she is starting to make noises with her mouth. She has kept us entertained all weekend and she loves the audience. They started her tube feedings again today. Please pray that she will be able to tolerate those feedings. They are diluting her milk and starting the rate out very slow so they will be able to tell if her stomach has had enough time to heal. She continues to change and do something new everyday. What a blessing a child is, all the rewards you receive from just being a parent. As one of her nurses stated, "only a baby can make some people a morning person". Barrett continues to receive her cyclosporine, prednisone, and cellcept by IV and will not receive those again orally until she is tolerating her tube feedings. Remember these three drugs help prevent GVH and if she is still having diarrhea her body cannot absorb these drugs. I would like to mention that many of you ask how do we do this, and it is like I have said many times, "you will do anything for your child". But I would not be being honest if I did not tell you that it is starting to wear on us a great deal. It has been over five months since Barrett's diagnosis and we are so ready to go home and be a family. These trips to the hospital, where you are here for two weeks, take their toll on you and without the Grandmother's help, Neal and I would be at a loss right now. Please pray that Barrett will remain healthy and that her hospital stays will become fewer and further between. Every time we are in the hospital, I find myself with a new lesson learned. Perhaps the Lord places us here to continue to remind me how blessed I am. As I write this, I do not want to imply a guilty conscience on anyone but to remind myself years from now, when I read back on this journal and all this is just a memory, how fortunate my life has been. The new hospital is wonderful and the myelosuppression unit allows all the children to get out of their rooms and walk the hallways. A benefit that they did not have before in the old hospital and as I watch all these children it just breaks my heart. I am fortunate that Barrett will probably never remember any of this but the teenage girl who is missing her last semester of high school and her senior prom, or the young man who is missing the opportunity of getting his drivers license at 16, or the little girl wearing miniature chandelier earrings will remember. All these children have
smiles on their faces and they are stronger than I know I ever could
be, my heart is breaking for them. Once again, they continue to show
me how lucky I am. I find myself feeling a lot of emotions and just
thinking of myself lately because I so ache for a normal life and We probably will not be released from the hospital until the end of the week or the first of next week, it all depends on how well Barrett tolerates her tube feedings. Please pray that we will return home soon with our healthy, happy child. Mom Friday, February 27, 2004 (Day +71)
10:30 am - Good Morning Prayer Warriors! Barrett is feeling much, much better. She is rewarding Mom and Dad with extremely wide toothless grins. Soon, those toothless grins won't be toothless anymore. Her blood counts are down but the Doctors are not concerned about it. She continues to be on a high dose of prednisone. She is not interested in eating but pray that when she gets home she will be interested again. They will try to start her on the feeds again this weekend with extremely diluted milk. The family may get to come home middle of next week if the feeds go well. Please pray that Barrett will tolerate her feeds, the GVH will be under control, and that she will continue to feel better with no visits to the hospital. Amie Joye
Wednesday, February 25, 2004 (Day +69) 8:00 am - Good Morning Prayer Warriors! Barrett's stomach biopsy came back positive for Graft Versus Host Disease. The Doctors have discontinued her feedings for a few days to let her GI tract heal. She will start receiving TPN's and Lipids today and she can have Pedialyte by mouth so that maybe she will continue to eat once we start her feeds up again. She continues to do well and the Doctors remind us that even though this is painful, GVH helps to keep her leukemia from maybe coming back. So we pray that this pain is all worth it and it is God's Will to keep her leukemia from coming back. It hurts so much to see her hurt and know that we cannot do anything to make her more comfortable. She has slept well for the last two days, considering she did not sleep much the two days prior. Please pray that our hospital stays will start becoming fewer and far between. This is wearing on all of us who love Barrett. It does something to you each time she is in pain and you cannot make it better. Plus, we all need to have a normal family life. I truly believe God does not give us more than we can handle, but sometimes I just want to run for the hills screaming. I never get angry at Barrett for her illness or anyone else for that matter. I have found it to be an honor to be Barrett's mom. She is a wonderful child and has done more in her short life than I will accomplish in all of mine. Please pray that this GVH will stay under control for the rest of her life, that she will continue to have an appetite, and that she will have a full recovery. Mom
Tuesday, February 24, 2004 (Day +68) 8:00 am - Good Morning Prayer Warriors! Barrett is doing much better and we hope to have the results from her stomach biopsy today. The Doctors feel that Barrett has a textbook case of GVHD and it will just have to run its course. The diarrhea appears to be lightning up and she continues to take a bottle. Mom
Monday, February 23, 2004 (Day +67) 8:30 am - Good Morning Prayer Warriors! Barrett is still not feeling well. They are trying to keep her hydrated and she has continued to have diarrhea all weekend. It appears the GVHD is in her GI tract area. The GHVD came back because Barrett's medications were not being absorbed because of the diarrhea and that caused her levels to drop. Older kids tell the nurses the GVHD in the GI tract is a very painful ache and it appears that Barrett is very uncomfortable. They started giving Barrett her Cyclosporine by IV again and her levels have come back up. Hopefully, now this GVHD will run its course, the diarrhea will stop, her GI tract will heal, and she will stay hydrated. As far as eating, they have her so full on fluids that she only takes sips of her bottle every now and then. Once she is hydrated and the diarrhea has stopped, she will only receive fluids at night. Pray she will regain her appetite then. The family expects to be in the hospital a couple of more days if not longer. The Doctors continue to say that Barrett's condition is not life-threatening and this is just another bump in the road that is to be expected. Please continue to pray for Barrett's full recovery. Amie Joye
Friday, February 20, 2004 (Day +64) 10:00 am - Good Morning Prayer Warriors! As you have probably read, we are back in the hospital but it is not such a bad thing. The Lord continues to work in mysterious ways. We are waiting on labs to determine what may be wrong. It could be dehydration from the magnesium, an infection in her central line that can be causing her GVHD to be acting up, or it could be an infection in her GI tract. They tell us all this is normal, that this is treatable, and that we will be in the hospital for the weekend. Barrett is doing very well and everyone teases and says "she just missed us". The Lord makes everything happen for a reason. One good thing that has happened is Barrett has taken six pedialyte bottles since last night. Yesterday, she would not take a bottle. Today, she is drinking like she never stopped. Yes, we know she is dehydrated but the Lord worked in that way to get her to eat again. Another wonderful thing that happened last night was Barrett rolled over. We have been practicing all week with no luck and during the middle of the night, she decided to "wow" us once more. We are truly blessed and these are all great things even if we have to be in the hospital. One thing I am trying to learn is that when life serves you lemons, make lemonade. Please continue to pray that Barrett will continue to eat and that she will have a full recovery. Mom
8:30 am - Good Morning Prayer Warriors! Barrett was readmitted to the hospital last night. She was dehydrated and has some type of infection. They don't know what type of infection yet but the Doctors will do some tests today to determine what it is. This infection may be a blessing in disguise. Once at the hospital, Barrett took five 2 oz. bottles of Pedialyte. Something good can come out of every situation. Mom will try to update us later today when she knows more. Please keep praying for Barrett's full recovery and that she will continue to eat. Amie Joye
Thursday, February 19, 2004 (Day +63) 8:45 am - Good Morning Prayer Warriors! Barrett continues to do well; however, we were up several times last night changing many diapers. She is now on oral Magnesium to replace her IV fluids she was receiving at night. Unfortunately, the side effect of that drug is diarrhea and we do not want her to get dehydrated and have to go back into the hospital. We are waiting to hear from the Doctor now to see how to proceed with this drug. We see Barrett getting stronger every day and she is still not eating. We see some improvements with her eating every day. With your prayers and the Lord's will, hopefully, she may be eating soon. Please continue to pray that Barrett will regain her appetite and have a full recovery. Mom
Wednesday, February 18, 2004 (Day +62) 10:00 am - Good Morning Prayer Warriors! Barrett had a really good report at clinic yesterday. However, her Cyclosporine levels were down so they had to up her dose. She also started a new medication that will replace her IV fluids at night. Barrett has actually entertained the idea of food. She still is not eating but she is not fighting it like she was. Please keep up the hard work of praying the Barrett will regain her appetite. Amie Joye
Tuesday, February 17, 2004 (Day +61)
8:15 am - Good Morning Prayer Warriors! Barrett is doing wonderful at home. We have even had luck with trying to feed her. She is still not wanting to eat but she no longer clamps her mouth shut when food is brought to her lips. Keep praying that she will want to eat again soon. We have to be in clinic
today and I will post you on her status. We are so A child, who appeared in the Vanderbilt House Organ Magazine at the same time Barrett was in it, has passed away. She had AML which is another form of leukemia and it is my understanding that it is harder to treat. She had been in remission and her relapse appeared to happen very quick. She was less than three years of age and was a precious and feisty little girl. I do not want to reveal her name due to privacy for the other family. Please remember this family in your prayers. Please continue to pray that Barrett will regain her appetite soon and that she will have a full recovery. Mom
Friday, February 13, 2004 (Day +57) 8:00 am - Good Morning Prayer Warriors! Things are continuing to go well at home.Many of you have asked if Barrett can have visitors and I am sorry to say that she cannot. Even though Barrett's blood counts are normal, she still has a suppressed immune system due to some of the drugs that she is taking. We are told that it will be sometime before Barrett will be able to have visitors other than her care givers. We had a very good visit to clinic yesterday and Barrett has gained two pounds in three weeks. They are very impressed with her weight gain. Unfortunately, she still does not want to eat. It appears as if she has forgotten how to swallow. If you get food in her mouth, she does not swallow it and then she gets upset. The Doctors say this is normal after what all she has been through and that it will be a learning process. We keep trying to feed her and she no longer clamps her mouth shut. This is a good sign. Keep up the prayers and maybe by the end of the month, she will be eating. I cannot wait to get her off this 24 hour feeding tube. We have to push the pole around with us every where we go in the house. Some of you have asked who Mr. Carrell is and he is one of the largest donors to the new hospital. As a child, he spent some time in the hospital himself so the Children's Hospital is very dear to his heart. He is a great inspiration and it was such a privilege to meet him. I was honored that he wanted to meet Barrett. They tell me that he inquires about her often. The Lord continues to remind us that He is in control of this situation and I have much to be thankful for. I was talking with someone the other day, this someone who gave Barrett her boxing gloves, and he stated that Barrett has touched so many people through her illness. When I started this journal, it was to inform people of Barrett's condition and it was also my therapy, but through this I have prayed that the Lord will use me to do His will. As I have said before, if Barrett saves one soul, this will all have been worth it. I love my daughter with all my heart and I am so proud of her. She has taught me more in her short life and I hope that we raise her to never disappoint any of you that have stuck by her. Barrett is trying to sit up on her own but she still does not want to roll over. They tell me this will happen in time and to keep encouraging her. She talks sometimes and when she has something to say, the whole room stops to listen. She is trying to cut two bottom teeth and her hair, eyebrows, and eye lashes are coming in very dark. It will be interesting when she gets off the Cyclosporine (which will be a long time from now) what color her hair will actually be. We are very excited about all her changes and I know a month from now I will look back and wonder were has the time gone. Please continue to pray that Barrett stays infection free and that she will have a complete recovery. Mom
Wednesday, February 11, 2004 (Day +55)
Thank you all so much for the wonderful prayers. We wouldn't have gotten this far without them. Keep up the good work, Prayer Warriors! Amie Joye 9:00 am - Good Morning Prayer Warriors! Barrett is doing wonderful. The family was able to come home yesterday. However, she is still limited in the visitors she can see. Please pray that Barrett will continue to recover from her illness and that she won't have to go back into the hospital. Amie Joye Tuesday, February 10, 2004 (Day +54) 2:45 pm - Good Afternoon Prayer Warriors! Barrett is doing wonderful. Her Cyclosporine levels are up where they want them now. She is rewarding Mom and Grandmother with many toothless grins. They are supposed to get discharged this afternoon but are still waiting to see. Barrett is still not eating. Please pray really hard that she will regain her appetite.Be sure to check out the photo gallery for new pictures regarding the move to the new hospital. Amie Joye 7:45 am - Good Morning Prayer Warriors! We are in the new hospital and it is something to see. Barrett is doing well, her infection is gone, and she has not had fever for more than one week. We are continuing to give her the Phenobarbital and Cyclosporine together. We were having a time with her anti-seizure medicines and it was decided to keep her on Phenobarbital and give her a larger does of Cyclosporine. So far, her Cyclosporine level is staying up and we are not having trouble with it anymore. Please pray that this will continue to work.
Barrett is once again a star. We were interviewed again yesterday by the same people that she did her first video with and what was so great about this interview is that Monroe Carrell, Jr. was in this interview with her. He was wanting to meet Barrett and we were wanting to meet him. It was a huge treat. Although I wish another child would never have to grace the presence of this hospital but if they do it is an amazing place. Those who have donated have donated to a wonderful cause. Please continue to pray that Barrett will have a full recovery. Mom
Wednesday, February 4, 2004 (Day +48) 8:45 am - Good Morning Prayer Warriors! Barrett is doing better and there is not much new to report. She continues to have no fever and seems to be feeling much better. She started rewarding Mom and Dad with toothless grins again yesterday and is getting back to her active little self. The family may get discharged from the hospital either Thursday or Monday. They will return to the Ronald McDonald House. Please continue to pray that Barrett will have a full recovery. Amie Joye
8:45 am - Good Morning Prayer Warriors! Yesterday, the cat-scan showed the spot in Barrett's lung to appear in a fuzzy-like nature. This means the spot is improving. We may never know if the infection was viral or fungal. She continues to have no fever. They are going to start her on a new anti-seizure medicine today and an oral cyclosporine medicine. They may let this medicine be given through her nose tube. She is having many mouth aversions to the medicines given orally and hopefully, by giving it through the nose tube, she will want to start eating again. Barrett is doing better everyday. She wants to play all the time. Please continue to pray for Barrett's recovery. Amie Joye Monday, February 2, 2004 (Day +46) 8:30 am - Good Morning Prayer Warriors! Barrett is doing much better. They are in the process of transitioning her Phenobarbital to Kappra. The Kappra is having the same effect on her that the Phenobarbital did at first. It makes her very sleepy, almost in a drunk-like state. It will take about a week for her to get used to the drug and once she does, hopefully Barrett will feel much better.She has had no fever for 48 hours. We are currently waiting on her Doctor to let us know if he is going to repeat the cat-scan. She still doesn't have much of an appetite but there are signs that make us think she is getting her taste buds back. Hopefully, once she feels better again, she will want to start eating again. Please continue to pray for a full recovery. Amie Joye September 2003 | October 2003 | November 2003 | December 2003 | January 2004 February 2004 | March 2004 | April 2004 | May 2004 | June 2004 | July 2004 | August 2004 |
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