Since the beginning of treatment Taylor’s plan has been adjusted by her doctors to help Taylor deal with the side effects. Taylor was getting very bad headaches, fevers, vomiting & just not feeling well. We are hoping her last treatment will be August 2011 & she will be in remission. Since the time Taylor was diagnosed she has had approximately 10 MRI’s, 7 X-Rays, 2 Full Body X-rays, Nuclear Bone Scans, Neurophyschometric Testing, 2 rounds of IVIG infusion therapy, 7 rounds of chemotherapy so far, a TON of doctor appointments and blood work to many times to count. Taylor currently takes at least 7 different medications a day, the weeks of chemotherapy that number goes up.
Now that we know more about Histiocytosis & we know that ear infections, high fevers, cradle cap & severe diaper rash can all be symptoms of it I sometimes find myself wondering exactly how long Taylor has had this and maybe we just didn't know it?
Taylor has not let the fact that she has a port in her chest slow her down, she LOVES soccer & being active. She gets very upset when she has to miss school for chemo or doctors appointments. Her class, teacher & the staff at her school are very supportive of her. We don’t know what to expect in the next year, but we pray that this treatment plan works & that at the end of it this disease will be in remission. Taylor is the strongest 9 yr. old we know, she goes through things that no person or child should have to go through & she always has a smile on her face. She makes us proud everyday with the strength she has shown & how positive she is every single day. She rarely complains & never gives up. She is an inspiration to us & because of this we have learnt to take one day at a time, cherish EVERY moment & never lose faith.
We got involved with Liam’s Lighthouse because I have followed Liam’s story through his Carepage & I was so upset when he passed away. This beautiful little boy lost his life to a disease that it took the doctors to long to diagnose him with. I kept saying to myself, what if he was diagnosed sooner? Taylor overheard me talking about him passing away & she said “Mommy it’s not fair he was just a baby. Why didn't God take me instead? He never got to tell his Mom & Dad that he loved them.” That is when I said to myself it is not fair & I need to try to do something to help kids like Taylor fighting Histiocytosis & kids like Liam, who have lost their battle. We tried to spread the word as much as possible to our family & friends & we asked them to do the same but I always wanted to do more I just didn't know how to go about it. I never spoke to Michelle until she posted about Rare Disease Day 2011 on Liam’s page. The Today Show is an hour away from us so of course we were going & this was the spark I needed to do more for these kids affected by ALL Histiocytic Diseases. I spoke with Taylor & asked her how she felt about spreading the word about Histiocytosis & she said yes she wanted to, so leading up to Rare Disease Day our family did multiple interviews with local news channels, newspapers & her doctor also had a press conference at Cohen’s Children’s Hospital, where Taylor is treated. We met Michelle, Rochelle, April & Jennifer at the dinner the night before the Today Show & we knew that we wanted to be a part of what they are doing to make a difference.
We are honored to be a part of Liam’s Lighthouse Foundation & we know that we will make a difference.
BOWLING 4 HISTO
ANNUAL BOWLING and SILENT AUCTION FUNDRAISER TO BENEFIT LLF
In honor of TAYLOR RYAN
Click HERE for details!
If you would like to make a donation in Taylor's honor, please do so by donating here. Taylor's family will be notified of your generous donation and they thank you for your support!