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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 Thursday, September 9, 2004 (Day +266)
10:15 am - Hello Prayer Warriors! Just a quick update. Barrett is still doing very well. She still is not eating. She has the drive to crawl but is still not going anywhere and she can stand holding a chair for a few seconds. Please pray that Barrett continues to get well and that she will start eating soon. Amie Joye
Monday, August 30, 2004 (Day +256)
9:00 am - Hello Prayer Warriors! Barrett continues to do well. Her prednisone taper is going well also. Her appetite is about the same. Please pray that Barrett remains cancer free and that her appetite will change soon. I hope you enjoy the new pictures I've added. Mom Monday, August 23, 2004 (Day +249) We have started tapering the prednisone and God willing, we plan to have her dosage down to 4 mg's by early October. Dr. Frangoul had not planned to start this taper for several more weeks. He stated that the Cellcept is a very strong drug and that she did so well on that taper, he decided to begin the prednisone taper. Once we reach the 4 mg prednisone dosage, we will then start the Cyclosporine taper. The Cyclosporine taper will take four to five months and then I assume the prednisone will be the last immune suppression drug that she will come off of.
I can almost see the light at the end of the tunnel for Barrett and all her medicines. Once we are off the immune suppression drugs, Dr. Frangoul stated that we could take the nose tube out and do a little more experimenting with her eating, assuming she is not eating on her own by then. The immune suppression drugs, without enough hydration, can be very dangerous to the kidneys and liver, so we need the nose tube to make sure Barrett stays hydrated.
Please pray that these tapers go well and that she will remain cancer free and have a long and healthy life. I pray that she will not have a flare up of GVH, but sometimes a little flare up is not a bad thing. If there are any leukemia cells hiding in her body, the GVH could attack and kill those leukemia cells. I pray that she does not have any of these leukemia cells but only God knows and only God knows what plan He has for all of us. I have to trust and have faith and not to question whatever lies ahead for us and remember that He is in control.
Barrett pulled herself up on her knees this weekend while in her crib, she thought, "What a big girl I am" and she has even stood by herself while holding onto a table. She is so busy with her hands and I pray for the day when she will hit the floor running. She wants to go so bad. She watches her cousin Trey and you can just see the wheels turning in her head.
Please continue to pray that Barrett remains cancer free.
Mom
Tuesday, August 17, 2004 (Day +243) 4:30 pm - Hello Prayer Warriors! Barrett is doing wonderful. She is completely off the Cellcept medicine and the bolus feedings are going well. She is gaining weight, nibbles on some food, and has started drinking from a sippy cup. All of a sudden, she started drinking and swallowing and as we watched in amazement, I think we all said a prayer of thank you to God. The baby steps we are taking with Barrett, in regards to her eating, are not so bad when you get rewarded with something positive.
We have started introducing her to milk but she prefers her water, so our next goal is getting her to drink the number of ounces of milk she needs for a day and use the nose tube just for medicines.
Barrett is becoming very independent; she wants to feed herself with the spoon and wants to hold the sippy cup without any help. Sometimes when we try to help, she lets us know in her own way that if she cannot do it then no one is going to do it. We are still dealing with the issue that some days Barrett will nibble on food and some days she will not take a single thing by mouth. Once again baby steps.
We have started working with an Occupational Therapist; I am so excited about all the therapy Barrett is receiving. I know that I am doing everything within my power to get Barrett the help she needs to catch her up developmentally.
Barrett has started talking and it will not be long before she masters, "Da Da". She babbles constantly and has started using multiple syllables. We talk to her all the time and she fills us in on everything that has happened to her during the day.
She has four bottom teeth and one of her top teeth is about to break the gum line. Cutting teeth has not been a problem for Barrett, she is not fussy and it does not appear to bother her other than she bites on everything, which is normal. I assume with everything she has been through, cutting teeth is no big deal. I will always wonder how much pain Barrett has suffered with her illness, because my little girl continues to amaze me at how strong she is.
I continue to thank God every day for the blessing He has given me and for every day that we all have together. As I look back and think it has almost been one year since Barrett was diagnosed and I cannot believe how quick time has passed. I can honestly say my faith is just as strong today as it was on September 16, 2003, probably stronger. I have learned the power of Prayer is very strong and that God is in control and that I have to trust and accept His plan.
Please continue to pray that Barrett will remain cancer free.
Mom
Thursday, August 5, 2004 (Day +231)
2:30 pm - Good Afternoon Prayer Warriors! Barrett is doing wonderful. We go to clinic tomorrow to try once again to get Barrett her IVIG infusion. Last Tuesday, she was supposed to receive this infusion and they could not get a vein. After ten attempts, the last being someone from the NICU I.V. team, they said go home and we will try again next week. This infusion gives Barrett antibodies that her body is still not making, but eventually she will begin to make them on her own. We have two more weeks of the Cellcept drug, one of the immune suppression drugs, and she has done wonderful with this taper. She has not had any signs of GVH. Dr. Frangoul's plan is to start tapering down the prednisone in September and eventually we will begin to taper down on the cyclosporine. Please pray that these tapers go well. The sooner Barrett is off all her immune suppression drugs, the better chance that she will not relapse.
Physical Therapy is coming along and Barrett is doing wonderful. She continues to do new things everyday and her physical strength is getting better all the time. I still wonder if she will ever crawl. As busy as she is, I think when she figures it all out, she will hit the ground running. The Doctors and the therapist say that Barrett's curiosity is what will help her catch up. Barrett is a very sociable child; it amazes me that she seems to never meet a stranger.
Speech Therapy is still coming along and we are making strides. We are now bolus feeding Barrett during the day and so far that is working well. For those of you who do not know what bolus feeding is, it is where Barrett gets all her milk at once. The milk gravity flows through her nose tube until she has received the number of ounces that she needs for that feeding time. We are trying to expand her stomach and also teach her the difference in her stomach being full and empty.
Through God's Will and all of your prayers, Barrett is doing so well. As of right now, Barrett shows no signs of any damage from her strokes and we continue to pray everyday that she never does. Barrett is a very strong and determined child. I am not saying this because I am her Mother, but everyone who comes in to contact with her is amazed by her personality.
She has definitely taught me that feeling sorry for myself is a waste of time. Although, Barrett is a child and she is not aware of the daily trials that we as adults face, she lives life and loves every minute of it. She hardly ever cries. If Barrett is crying it's usually because she wants her bed and to go to sleep. In her world, there is not time for pity parties, just time for "let's live and enjoy every minute".
My heart has been weighing heavy as of late. I have come to the conclusion that I feel everyone should have to experience clinic or even a children's hospital. Every time I visit clinic, I leave there with a new perspective on life. Children are stronger than most of us. Most of the children at clinic are very determined and usually act as if nothing is wrong with them. Even though I realize how ill some of them may be, you have to admire their attitudes.
Our last several visits have been good for Barrett but unfortunately not so well for others. Two of the families that we had gotten close with, their children have relapsed. They received their transplant around the same time as Barrett and even though their cancers were different from Barrett's, you still have to wonder, why do our children have to be sick?
I have tried not to ask "Why?" but I have said on many occasions, "It's just not fair". Children are supposed to have fun, play, and giggle, not be the ones who teach us what a blessing life really is or what they are going through is going to help someone else in the future. I often ask myself why I cannot see life as my child and these other children see it, but I am ever so grateful to be privileged to see it through their eyes.
The stories of their little lives help me remember how I should be living instead of how I am living. I try to be strong for my daughter and be a role model for her instead of the other way around, but when you have a young child, who relapses a second time and the Doctor encourages the family to take the child home and let her be a child, and the family says the child wants to move forward with her treatments, then the Doctor says to the family that the child is not old enough to be making these decisions, the family then asks the Doctor to talk with their child about why this child wants to fight.
When the child is asked why they would want to go through this again and the child says, "I am still here because what has been done for me was once experimental and if I do this, I will be helping someone else in the future". Six years old and going on sixty. Because of this child's will and fight to live she is being prepared for her second transplant tomorrow. Please pray that all goes well.
And then you have a teenager, whose faith and trust in God is so amazing, I can only wish that I was as strong as this teenager is. As I read their update and it stated that the scans did not show what they had prayed for and as of right now a second transplant is not an option, and this teenager wrote the following words, "Despite all this, I haven't lost any of my faith. In fact, I feel a peace that's strange. I'm scared of a lot of things, and I don't understand, but all I can do is put all my trust in God and believe in His plan, whatever that may be. I just have to keep living and loving. God will take care of me. He has NEVER let me down, and I will continue to serve Him with every part of me".
These two young people are very special to me and my family. Years from now when I read back through mine and Barrett's journal, I want to be able to remember what they have taught me. These are the lessons of life and sometimes these lessons are taught by our youngest. I hope as you have read this update you have found the same comfort that I have and in some small way, they have affected your life as they have enriched mine.
I hope to have new pictures of Barrett posted next week. Please continue to pray that Barrett remains cancer free and that she will start eating and drinking on her own again soon.
Please pray for these three Messengers from God.
Mom
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