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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 Wednesday, July 21, 2004 (Day +216) 10:30 am - Hello Prayer Warriors! Barrett is doing wonderful and changing every day. It is amazing how addicting your children become to you. Neal and I rush home everyday and are welcomed by that sweet smiling face along with that anxious rocking motion telling us to "hurry and pick me up". She has started her Physical Therapy and has had one session of Speech Therapy. I am excited to say that Physical Therapy went very well and the therapist stated that Barrett's mind is way ahead of her physical strength. She wants to get down and go so bad and Neal and I have said when she finally builds up her strength she will be gone. We are continuing to taper her on the Cellcept which is one of the immune suppression drugs. Barrett should be off the Cellcept by the end of August and then we will begin another taper on the prednisone. If the prednisone taper goes well, Dr. Frangoul may begin the Cyclosporine taper as well. The Cyclosporine taper will take approximately about four to five months, praying that GVH does not flare up. The longer Barrett's immune system is suppressed the greater chance of a relapse. So the donor's immune system is waking very slowly, this also helps reduce the flare up of GVH. If you remember GVH is when the "graft" (donor) attacks the "host" (Barrett). It is amazing that Barrett is 100% donor's DNA but the donor's immune system is still suppressed to an extent within Barrett. It gets very confusing sometimes and not being educated with a medical background, I feel as if I am going in circles trying to understand it, much less explain it to someone else. That is one of the reasons why I write so much detail, because ten years from now when I think back, I am sure I will have forgotten all of these details. Barrett is still not eating. My goal is to get Barrett to drink the number of ounces of milk that she needs during the day so that we can get her off the feeding machine, and once this happens we will work on the eating. Because of the drugs that Barrett is still taking, we have to keep Barrett hydrated so the medications do not affect the function of her liver or kidneys. Barrett sits in her high chair every night while we have dinner and usually entertains a couple bites of food and that is usually all she will want. It is interesting, one day she may take a couple of bites of cheese and appear to like it and then the next day it is as if she cannot stand the taste of cheese. We continue to try anything and everything to interest her with food but Barrett does not usually have a chance to get hungry and when she does suffer from the discomfort of hunger, she does not associate what that discomfort is or how to cure that discomfort. She is on the feeding machine four times a day for one hour each time and receives continuous feeds through the night. It is amazing how all of this is such a fine balance. Please continue to pray that Barrett will eat/drink again soon, that she will remain GVH and cancer free. Mom (please feel free to read below)
To Barrett, my sweet angel, You will never know the kind of love that I have for you until you are a Mom. Everyone says how there is nothing like being a parent and that is true. Your Father and I cannot get enough of you, you are our whole world. As the years pass by, you will grow tired of hearing this, but there will be days that you will appreciate more than others knowing how much you are loved. While you sleep, we continue to admire you. We love watching you rub your eyes, watching you enjoy your Einstein videos, and one of my favorites, while you sleep you have one pacifier in your mouth and one in your hand and how you remove one from your mouth and place the other one inside your mouth, all while you sleep and you make the sweetest noises. You make it sound as if you are enjoying the best meal you have ever had. As a parent you watch and learn from your children, and you are the one thing that I cannot turn off, I could watch you 24 hours a day. You are changing so fast and trying so hard to catch up. I know that I will blink and you will be going to your first slumber party. I think it will be harder for your Father than for me the first night we are away from you. Some of the things that you enjoy right now are being read to. You are so independent and you want to do everything on your own. You enjoy being outside and you like your baths and playing in the water. Since you are still gaining your physical strength, you communicate with us very well on where you want to go. You so love your cousin Trey and he is so busy that he does not pay you much attention. You want to play and go with him so bad. One day you will catch up, just be patient my precious child. Your Auntie Jill is going to be as special to you as Aunt Toni is to me. Enjoy that relationship, it will be very special. It is very rare that you do not share one of your "I'm so happy to be alive" smiles; it is as if you never meet a stranger. You have started wrinkling your little nose when you smile and I keep telling you that you are going to get a wrinkle before your time. That is how happy a baby you are. It is amazing how happy a child you are, I guess, us as your family can take credit for some of that, because we have made you feel so loved. The rest of the credit goes to God, because He made you who you are. With all that you have been through, you have still been perfect. You have such a good nature about you (this you get from your Father), you have this light from within you and you have made your Father and me happier than we ever thought we could be. You have given us a special gift and that is to know "A Love" that is more special than one that your Father and I have for one another. You have cut your fourth tooth and so far they are all on the bottom. I guess you will follow the McCain tradition and do things on your own and on your own time frame. This is not necessarily a blessing. Barrett always remember to hold your head high and be confident in who you are. Live life to the fullest and live everyday as if it were your last. This is one thing that I have learned through your illness; you have taught me much in your short life. What a wonderful teacher you are! With all my Love, Friday, July 9, 2004 (Day +204) 10:00 am - Good Morning Prayer Warriors! Barrett is doing wonderful. She has cut her third tooth; so far they are all on the bottom. She is gaining strength everyday in her arms and legs and if she could just figure out how to move her arms and legs, she would be gone. She wants to get down and go so bad, I know it is just around the corner. Speech Therapy is supposed to start on Monday and I hope and pray that maybe this time next month, Barrett will be eating and drinking on her own. Please pray for this, it will be so nice when we only have to use her nose tube for medicines and not food.
As I think back to one year ago and remember the tiny bundle that I held in my arms, I remember thinking how I did not want her to grow up to fast and now I look at her and I am so anxious for her to meet another developmental milestone. As a parent, "your whole world" is your children and I cherish every moment with Barrett. When I put her to bed at night and kiss her goodnight, sometimes I go back two or three times just to kiss those chubby cheeks one more time. I think to myself this may be the last time I kiss those chubby cheeks and I want to know that I made the most out of our time together.
We are now over the Day +200 mark and it is hard to believe that we have doubled since Day +100. We will not have another bone marrow test until December and that is approaching very fast. Every year that Barrett remains cancer free, the better chance that she will not have a relapse, please pray that she will remain cancer free.
Please continue to pray that Barrett's medicine tapers go well, that she remains cancer free, and that she will eat and drink on her own again.
Mom
Tuesday, July 6, 2004 (Day +201)
10:00 am - Good Morning Prayer Warriors! Sorry that I have not updated in over a week, things have been a little busy. Barrett is still doing wonderful. We had a wonderful Holiday and I will have some new pictures this week. To catch everyone up on what has been going on, Barrett pulled her nose tube out last Wednesday and as I found myself in a panicked state, all turned out well in the end. When I spoke with the Doctor on Wednesday evening, she asked that I wait until the morning to bring her in, unless Barrett refused to take her medicines or drink anything by mouth. As any mother will understand, I was so concerned about Barrett being hungry. One on the things you never want for your child and that is you never want them to be hungry or cold. The thought of Barrett being either one of these makes me feel almost insane. I had myself a good cry and a long prayer and the Lord has answered another one of my prayers.
Barrett surprised us all. She actually took her medicines and ate mashed potatoes and cereal and drank some milk for us on Wednesday evening. We were so excited and thought maybe the nose tube will not have to go back in. On Thursday morning, I called clinic and told them that Barrett was eating and drinking and unless something changed, we would see how things went before putting the nose tube back in.
Unfortunately, it had to be put back in. As we continued to give all of Barrett's medicines to her by mouth on Thursday, the less interested she became in eating. It seemed like every time she got over having to receive a dose of medicines, it was time to give her the next dose of medicines. When I called the Doctor and told them she had only drank about one ounce of water before noon time, they said bring her in and not risk the chance of her becoming dehydrated.
On Thursday afternoon, the tube was back in and all seemed to be back to normal. We returned to clinic on Friday for her normal clinic visit and all went well. We have started to taper her Cellcept, which is one of her immune suppression drugs. Hopefully, God willing, she will be off that medicine in seven weeks, praying that she has no signs of GVH (graft versus host). The Doctors are slowly waking her immune system by tapering these drugs.
We are still on the prednisone taper and that continues to be going well. We eliminated one of her stomach medicines that she was receiving four times a day and slowly we will start to see fewer medicines in her medicine bins. We have found out this weekend that Barrett likes the "baby gold fish" and actually opens her mouth for one. She enjoys salty foods and we are going to start trying her on some whole milk products. Please pray that she is no longer lactose intolerant and will be able to handle whole milk.
We are starting Speech Therapy, Occupational Therapy, and Physical Therapy at home. Speech therapy will help Barrett with her eating, swallowing, and food textures and physical and occupational therapy will help her with any weaknesses that she may have. She is doing the army crawl and stands up in her walker and seems to do something new everyday. For the first time in Barrett's life, she actually feels well. She is a happy baby, and I tell Neal all the time that the Lord has blessed us with such a good little girl. Even with Barrett's illness, she has been perfect and my little gift from heaven above.
As we watched fire works on the 4th, once again I was blessed with being able to enjoy a Holiday and see it through a child's eyes. Barrett enjoyed the fire works and she made it worth every penny. Children are so precious and as I appreciate all of your prayers for my daughter, more than words will ever be able to express, but it is a child's prayer that takes my breath away.
Neal and I had our weekly date night a couple of weeks ago and I saw a long time friend out with her family. When she told her little boy that I was Barrett's mom, he bowed his head down and clasped his little hands together to pray. When that mom said Barrett's name, her child bowed his head and prayed for my daughter. She told me they pray for Barrett every night and all I could do is watch with tears in my eyes. A child's prayer is the sweetest of all prayers. Many of you email me and tell me that your child prays for Barrett and I wanted to share this with you so you know how much all of your children's prayers mean to me.
Please continue to pray that she remains cancer free, that her strength improves everyday, that she remains GVH free, and that she will eat and drink again all on her own soon.
Mom
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