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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 Tuesday, March 30, 2004 (Day +103)
2:45 pm - Good Afternoon Prayer Warriors! Barrett had a bone marrow, spinal tap, and skin biopsy tests today. All of these tests went well. They did the spinal tap through her spinal column rather that the Omaya Reservoir and that went well. All of her chemistry lab work on her liver and kidneys came back with normal levels. So far, everything looks good. Hopefully, we will have the results of her bone marrow and spinal tap back on Friday so we can update you before the weekend. Please pray that all of Barrett's tests come back normal and cancer free. Amie Joye
Monday, March 29, 2004 (Day +102) 2:00 pm - Good Afternoon Prayer Warriors! Tomorrow is a big day! We have our Day 100 bone marrow test, spinal tap with a chemo injection, and a skin biopsy. Please pray that all these results come back cancer free! We had a wonderful weekend and Barrett's case of Mommy-itis has gotten worse. It will be a least one week for us to have the results of these tests and then I will write to her donor with the good news. Hope you are enjoying the new pictures. Please continue to pray that Barrett will have a full recovery and will remain cancer free for the rest of her life. Mom
Friday, March 26, 2004 (Day +99) 3:15 pm - Good Afternoon! Barrett got a really good report at clinic. She is still fever free. Please continue to pray for Barrett's full recovery. Amie Joye
8:45 am - Good Morning Prayer Warriors! Barrett ran a fever last night. Please pray that she has no infection and the fever will go away. Mom and Barrett have a very busy day planned at clinic. Barrett will have an echo cardiogram and a chest x-ray. Please pray that these tests go well and will have good results. Remember tomorrow is day 100. It will be a milestone in Barrett's recovery. Please pray that Barrett's day 100 tests on Tuesday show that she is still cancer free. Amie Joye
Wednesday, March 24, 2004 (Day +97)
11:15 am - Good Morning Prayer Warriors! Barrett had a wonderful clinic visit yesterday. Next Tuesday will be the day they will perform another Bone Marrow, Spinal Tap with a chemo injection (through her Omaya Reservoir), and a skin biopsy. They also hope to take one of her central lines out and Dr. Frangoul will talk to her Neurologist about whether or not to remove the Omaya. We do not care one way or another regarding the Omaya. Once her hair thickens, you will no longer see the Omaya and the risk of removing it could mean infection because it would be a surgical procedure. Also, the other wonderful news we received, because Barrett is doing so well, is that after next week we may have to be in clinic only one time a week instead of the two times a week now. All her levels have improved and Barrett is getting back to her old self. She still continues to be high maintenance, she wants to be held all the time, and the other night when she was wanting my full attention, I told myself this moment will never be again so I better enjoy it while I can. One day, she will no longer need to be held or want my full attention and then I will wonder, "where did all the time go?" I want to be able to look back and remember as I noticed the clock ticking away, that I gave everything I had during that one moment that I could have given Barrett. Barrett may not have everything she wants but Neal and I will make sure she has everything she needs. Barrett had a lot of surprises for her Daddy's 40th birthday and I am sure it had to be the best birthday Neal has ever had. To this day, I smile with pride every time I see Barrett light up when she sees her Daddy. I now know how I must have reacted when I saw my Dad. It is truly a blessing to see things through your child's eye. I am truly as much a Daddy's girl as Barrett is with Neal. Neal and I appreciate all your prayers. They have certainly worked in our lives. We are coping with things much better, we have gotten into a schedule, and things are feeling more normal everyday. Thank you so much for your concern regarding me and Neal. Please continue to pray that Barrett will have a full recovery and will remain cancer free for the rest of her life. Mom
8:30 am - Good Morning Prayer Warriors! Audrea was very busy with clinic yesterday and Neal's birthday. Happy 40th Neal! Anyway, Audrea said that Barrett had a very good report from clinic and she will update us later. Amie Joye
Monday, March 22, 2004 (Day +95) 8:00 am - Good Morning Prayer Warriors! Barrett is doing much better. Her liver function tests are showing improvements and hopefully by tomorrow's clinic visit, those levels will be where they want them to be. Her cyclosporine levels appear to be stable from these last two days, we are anxious to see what her Tuesday lab results will show. Please pray that giving her this medicine four times a day has been one of the answers to some of her problems. She is still not wanting to eat and has stopped drinking again. Please continue to pray that she will regain her appetite and pray that Neal and I will try harder to entertain her into wanting to eat. We had therapy on Friday and we are trying to build strength in her arms and legs now. She continues to do well, but when she has these setbacks of not feeling good, her developmental issues do not thrive. Please pray that she will not have any more of these setbacks. I will never forget when a social worker mentioned to Neal and me that she was trying to get us a room at the RMH and all I could think about is how many times I had heard of other people using the facility, but I never dreamed it would become a reality to me. Life can turn on a dime and I cannot stress enough that when your child wants to be read that bedtime story and you are exhausted from a very long day or that one moment you stop to give your child a hug and that hug may be a turning point in their life, just remember you did the best and most important thing that you probably did all day in that one moment. When I was on maternity leave, I learned to have a whole new respect for the stay at home moms. I could not get over how busy you are when you are home with a child, until you are in the shoes of a mom, one never knows. But while learning of this new respect for stay at home moms, I have a whole new greater respect to these moms who work 40 hours a week. My hats off to all you moms, whether you work full-time or not, (my) Mom you deserve a reward for all that you have done for your family and I Love You very much! As I continue to see the phrase, "In 100 years, will it matter what your bank account was, will it matter what car you drove, or how big your house was?" I have contemplated that a lot lately and my own opinion is that I will have played a role in a child's life, my child, and I hope in a 100 years the role I played may have made a difference to my grandchild or even my great-grandchild. We are fast approaching a great milestone for Barrett, Day 100! In case you were not aware of this Day 100, it is a great milestone if she is still cancer free. Please do not read between the lines, we feel that she still is cancer free, but we will know for sure after her Day 100 test. They will perform another bone marrow and spinal tap on or around this day. Please pray that she is still cancer free. I do not know the percentage rate is but there are high chances of relapse within these first 100 days. Our next milestone will be six months from transplant. Please continue to pray that Barrett will have a full recovery and will remain cancer free for the rest of her life. Please pray for me, for I am going to be writing the Donor after Day 100 tests are complete and we have the results. I am not sure what to say to one of my heroes. I am sure many of you may think, "how hard could a letter like that be to write?" and all I can say is, "imagine your child dying and this person comes along and saves your child's life, how hard is it to put all those emotions of gratitude and thankfulness for their care and concern on paper?" Many of you may ask why I have not written since the Eve of Barrett's transplant and the answer is we never knew what was going to happen after every corner we turned. It seems appropriate to write to her on a significant date and one that will be a wonderful milestone. Mom
Thursday, March 18, 2004 (Day +91) 1:45 pm - Good Afternoon Prayer Warriors! Barrett appears to be doing much better. She continues to make Neal and I laugh and brings us much happiness when she feels well. I do not mean to imply that we are not happy when she feels bad, it is just as I have said, "when your child feels good, you feel good". I do not think there is a parent that would disagree with that statement. Her kidney levels are back to normal but her liver levels are still elevated. We are going to go back to clinic tomorrow, praying that she will have better results. We are now giving her cyclosporine four times a day instead of three. We are giving her a smaller dose and they are hoping that since she is receiving it more often it will help her levels stay consistent instead of being up and down and all over the chart. Thank you so much for your encouraging emails, Neal and I need them right now, and as always please pray that Barrett will have a full recovery. Mom
Wednesday, March 17, 2004 (Day +90) 8:00 am - Good Morning Prayer Warriors! Barrett is doing better; she has rewarded us with some grins and some precious sounds of laughter. Her cyclosporine level is now up to the level that they want it to be but her chemistries, from yesterdays lab work, show that her liver and kidney levels are elevated. Medicine is such a fine line and they feel the reason for these levels to be elevated is due to the increased dose of cyclosporine that she received over the weekend. Some of the side effects from cyclosporine can be liver and kidney damage. That is the reason why chemistries are so important in her treatment and maintenance. We are lowering her dose of cyclosporine and going to repeat all her labs again at clinic today. Please pray that Barrett has not suffered any damage to these organs and pray for the Doctors' knowledge to balance her medicines and provide her with the best care. If I still have any young readers, I would like to take the time to stress the importance of math. I do not remember how many times in school I stated, "I do not know why we have to learn all this, it will be of no help to me in the future". Well, let me be the second one to tell you that math is used in everything. I am still amazed at how much the nurses and the doctors use math in every procedure they perform. I never would have dreamed how much math played a roll in their jobs. I am still amazed of the support that people still show for Barrett, it was six months ago from yesterday that she was diagnosed. Neal and I appreciate your continued support and concern. I cannot tell you that I do not know where we would be without all of your prayers. We continue to be stressed and the news from yesterday was just about the straw that broke the camels back for me. Many of you, when I see you out, state you do not know how I am coping with Barrett's illness. The truth is, I have my good days and my bad days. Since I have been home and been so busy with Barrett, I have moved away from the Lord. I do not pray as much and when I get a moment and remember it has been a while since I have thanked the Lord for another day, I find myself not concentrating on my prayer and then find myself doing something and getting sidetracked. I know that my faith is one of the few things in life that no one can take from me but all I want is a healthy daughter, quality of life for her, no more pain, and a happy home life for Barrett. When I continue to try so hard to give her medicines to her correctly and know that she is receiving them and then question why her levels are so low and then we change something to improve that level and we cause her problems somewhere else. It can be very discouraging and very trying to one. So to let you know, my patience is thin, I am exhausted, and I cannot see the forest for the trees and I am sure Neal feels the same as I do. I hope to have some updated pictures for you soon. Please continue to pray that Barrett will have a full recovery. Mom
Monday, March 15, 2004 (Day +88) 8:15 am - Good Morning Prayer Warriors! Barrett is still not feeling well. Her Cyclosporine level is still low, below 100, and the Doctors want it between 300 and 400. We have raised the dose she is receiving once more; she is already receiving more than an adult. She receives it three times a day and an adult would only receive it twice a day. The Doctor feels that she is not absorbing it, that she is metabolizing it to quickly. As we all know, children have a high metabolism, one of those things we lose as we get older. I am doing everything that I know possible to help my child with her medicine and I feel as if I am losing the battle. Please pray that this level comes up and that we will not damage her kidneys with the high dose that she is receiving. In case you have forgotten, the cyclosporine helps prevent GVH, and when this level is low it can be very dangerous for Barrett. I am beside myself. My child does not want to play, she has not smiled in more than one week, and she just feels bad. As I said, I am trying to think of every way to give her this medicine that will help her absorb it. I am almost to the end of my rope because I know there is nothing else that I can do. If her levels do not come back up and she gets a bad case of GVH, we will be back in the hospital. And that is o.k., if it will make Barrett well again, but every time we find ourselves right back in the hospital, she receives her cyclosporine by I.V. and they get her level therapeutic and then we end back up with her levels low once she is at home. It seems like the never-ending rotating cycle. Neal and I are beside ourselves. As any Mother knows, you feel many emotions when your child is sick. It does not matter if it is a little cold or a life threatening illness, as a mom you just cannot enjoy anything when your child feels bad. I need my daughter to start feeling better, I need her to smile and be happy. I need for her to be healthy. I do not think that I am asking for too much. This is when I have to remember, "God is in control and this is all out of my hands". Maybe I need to focus on that a little more than I have been instead of trying to figure out what I am doing wrong. As a mom I know how I feel, but at the same time I feel for Neal. I cannot imagine what a father feels when their child is ill. I think they would feel more helpless than a mother feels. Please pray that Barrett will start feeling better soon, that she will remain fever and infection free, that her cyclosporine level when get to a healthy level and remain there, and that she will have a full recovery. Mom
Thursday, March 11, 2004 (Day +84) 8:00 am - Good Morning Prayer Warriors! Sorry it has been so long since I wrote but we have had our hands full. Barrett was so happy and feeling so well last Thursday and Friday but that GVH has reared its ugly head once more. And this sure will not be the last time but we can hope and pray that it will be. On Saturday, Barrett started getting sick at her stomach again and becoming extremely fussy. At first, we thought it is because she was teething but we soon have realized it was her gut bothering her again. She has been in a lot of pain and has not smiled for us since Friday. Please pray that the GVH will go away and will show up less and less each time. Neal and I are exhausted to say the least. We have had a lot of long nights and stressed for the concern of our daughter. We have done a good job of trying to keep her hydrated this time and so far we have been lucky to stay out of the hospital. Please pray that are hospital stays will also be fewer and further between. We have to go to clinic today for a follow up visit and again on Friday. I do not mind the visits to clinic because the good thing about those is it means we are not in the hospital. All the same, it can be quite sad sometimes when you see the other children that were in the hospital at the same time as Barrett, receiving their transplants, and some are not doing well while others are doing just as well as Barrett. One teenager currently has only 20% lung capacity and her scans showed some improvement, she still has a long road ahead of her. The sad thing is the transplant has gone well but the damage to her lungs can be life threatening. They are not sure if the damage was caused by radiation or her chemo treatments. All the same, she has not been off my mind. As I sat talking with the teenager's mother, she was having to deal with the tug of war between work and wanting to spend time with her daughter, not knowing if her daughter will improve. It broke my heart to hear that her husband is laid off for one more month and her employment is making her feel that she has to choose between her daughter and work. What a lot of people do not understand is that many people in this situation end up losing their jobs, their credit, and sometimes everything they have worked so hard for. All of us parents know that our children are our priority but these illnesses take a lot of time and dedication. It is hard sometimes to return back to work when you know that your child is on the verge of being dehydrated or their cyclosporine level is low and you know that this all can be life threatening but for those who are not walking in your shoes sometimes may not understand. Neal and I have been so blessed to have such wonderful employers and a very supportive community. I cannot say enough how wonderful both of our David's have been to Neal and me. For those of you who do not know, Neal's boss and my boss's name is David. To both David's and all our other co-workers, thanks once again for being there and letting us take care of family first. Please continue to pray for Barrett's health and that she will have a full recovery. I will say once again, without God's healing hand and all her Prayer Warriors we would not be where we are today. Mom
Wednesday, March 10, 2004 (Day +83) 12:45 pm - Good Afternoon Prayer Warriors! Barrett is still home and doing well. Her stomach is bothering her due to the GVH. Please pray the GVH soon passes and that she starts to feel better. Also, pray that she stays free of fever and infection, that the GVH will be short-lived, and Barrett will be back to her happy, smiling self. Amie Joye
Monday, March 8, 2004 (Day +81) 3:45 pm - Good afternoon Prayer Warriors! Sorry for the late update. Mom and Dad had to take Barrett to clinic today and feared readmittance to the hospital. Over the weekend, Barrett ran a low grade fever, started vomiting, and had excessive stools all because of the GVH still present in her system. Barrett's fever came down on its own. She's doing fine and feeling much better. They are on their way home but Mom and Barrett will have to return to clinic tomorrow. Please pray Barrett will continue to feel better so she does not have to be readmitted to the hospital. Amie Joye
Thursday, March 4, 2004 (Day +77) 12:45 pm - Good news Prayer Warriors! The family is coming home today. They are being discharged as I write this. Barrett is doing wonderful. She is rolling over on her own so the days of having calm diaper changes are over. She can sit-up for extremely long periods of time. She is gaining strength every day. Everything she touches goes to her mouth. Please pray that Barrett stays free and clear of the GVH, that she has no infections or fever, and that her hospital visits get fewer and further between. Amie Joye
Tuesday, March 2, 2004 (Day +75)
9:15 am -Good Morning Prayer Warriors! Hope you enjoy all the new pictures. We have a camera ham for a daughter. Many of you have asked how many hits this website has a day and they are averaging between 6,000 and 7,000 a day. Thank you so much for your prayers and concern for Barrett. Barrett had a wonderful Monday and continues to surprise us with something new everyday. She is still tolerating her feeds and the hope is to up the rate each day. She will start receiving her Cellcept orally today and hopefully, the Prednisone orally on Wednesday and then the Cyclosporine of Thursday. She was taking these medicines orally before she was readmitted into the hospital but has been receiving them by IV to help fight the GVH. When you were having diarrhea as bad as she was, her body could not absorb the medicines so they gave them to her through IV so that her body could absorb the medicines. The Doctor's goal is to discharge us Thursday if Barrett is tolerating her feeds. Please pray that she will tolerate her feeds and that we can go home and be a family again. I was talking to my Aunt last evening and stated how I wished we would be able to attend Easter dinner with the family. I know that will not be possible due to the fact there would be so many people and children there, but hopefully we would not have to spend our Easter in the hospital like we had to our Christmas. Please pray that Barrett will stay infection, fever, and GVH free and that her hospital stays are winding down. Since we have been back in the hospital, we are seeing some of the patients returning with a relapse. I will stress that they have not had a transplant but all the same it is very scary. I do not want this to happen to Barrett or any other child for that matter. Please pray for all these sick children and please pray that Barrett will have a full recovery. Mom
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