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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, October 28, 2004 (Day +315) 11:00 am - Good Morning Prayer Warriors! Barrett is doing absolutely wonderful. She is crawling everywhere and has a funny little dance she likes to do to music. She is still not eating much. Tomorrow, she will have another clinic visit. Please pray that she is still cancer free, has no GVH, and she will start eating again soon. Amie Joye
8:00 am - Hello Prayer Warriors! Barrett is doing wonderful! Sorry it has been so long since I have updated you last, we have been so busy. As Amie stated, we went to Florida and Barrett had a wonderful time. She loved the pool and the beach. We finally found something that she likes to eat. Can you guess? Sand! If it had any nutritional value I would have brought some home. Why is it they put everything in their mouths other than food when you want them to eat? She continues to gain weight and has started crawling and pulling up. She babbles all the time and is doing very well with her therapies. She is taking steps when assisted and wants to be outside 24/7. I do not know how we are going to handle this over the winter. It will be hard for both her and Trey.
We go to clinic tomorrow and as always we pray for good blood counts and weight gain. Barrett is almost completely off her prednisone and Dr. Frangoul plans to start tapering the cyclosporine around the first of November. The cyclosporine taper will take four months and once she is off that medicine, she should be able to discontinue her antibiotics. Once she is off this last immune suppression medicine (cyclosporine), we will be able to remove the nose tube. The immune suppression medicines can be harmful to her liver and kidneys if she were to get dehydrated.
December 18, is approaching very fast. If Barrett stays in remission and if the donor agrees, we will be able to exchange phone numbers. I so want to meet her and pray that this will happen. It goes without saying that I want Barrett to stay in remission, but I also want to take the opportunity to thank the donor for her selfless gift of life. Without all the donors in the world, many would not have a second chance at life. Their gift is one truly from the heart!
Although Barrett is 17 months, in my eyes, she has lived a lifetime. I know there are many children out there who are happy and as good natured as Barrett, but when I see Barrett laugh, get excited about the smallest thing, and cry only when she is sleepy, I see a child who loves life and in my eyes is wise beyond her years. Sometimes I wonder if she knows how close to death she was, and she says, "Never again, I am going to live everyday as if it were my last". That is what I see when I see those big blue eyes sparkle, I see a fighter and I am reminded that I am her student and she is the teacher.
Barrett tries to get as much out of a day as my Father does. It is kind of like the saying, "Trying to squeeze blood from a turnip". Barrett and my Father "try to squeeze every waking minute out of a day". When I look back over the past year, it is hard to believe how far we have come and I look back and think that wasn't so hard after all. Of course, I wasn't the one doing all the work, but when you give up hope, don't! A year can make a huge difference and remember to always give your worries over to the Lord. He is in control and once this is understood, I can honestly say that the world can be lifted off of your shoulders.
Many of you (Barrett's Prayer Warriors) continue to introduce yourselves to me and mention that you continue to pray for Barrett. Barrett still has a long road ahead of her, and when I say, "Without Barrett's Prayer Warriors and God's healing hand, I do not know where we would be without you". I mean this from the bottom of my heart. I feel so blessed when I have an opportunity to meet Barrett's Prayer Warriors, because I want the opportunity to thank you and hopefully show you how much your thoughtfulness means to me.
Barrett received another opportunity to appear in another fundraiser video. This made her third, the first two were for the Vanderbilt Children's Hospital, some of you may have seen parts of it during the Vanderbilt Children's Telethon, but the new video is for Vanderbilt Life Flight. There were three families chosen to share there stories on how the Life Flight Crew played a large role in the care their family members received.
It was an opportunity that I was so excited to have been given. How many times do we see an emergency vehicle pass by or see Life Flight and take their jobs for granted? And like most things, once you have to use a service that service is then appreciated and sometimes not so appreciated. Well, being able to do the interview allowed me to voice my opinion of what a wonderful job the Life Flight crew does and how they helped my daughter receive the care she needed in a timely manner.
Please continue to pray that she remains in remission, no GVH, and that she will start eating and drinking.
Mom Friday, October 8, 2004 (Day +295)
9:30 am - Good Morning Prayer Warriors! Barrett is doing extremely well. Audrea is going to try to have an update for us on Monday. Amie Joye
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