Taylor's Story
East Islip, New York
Taylor's Story by: Teresa and John Ryan Taylor was our first child born on December 6, 2001 at 9 lbs. 3 oz & 21 & half inches long. We were overjoyed when she was born! She was a healthy baby girl that made our lives complete. As an infant & toddler she had many ear infections, episodes of high fevers, bad diaper rash & cradle cap. When Taylor was about 2 years old we switched pediatricians, we just felt that we needed a doctor that actually spent time listening to us. At the age of about 3 I brought her to her new pediatrician, Dr. Mirelle Constant, because I noticed she was urinating a lot, about every half hour. While we were waiting for the pediatrician to come in to the room, Taylor kept going back & forth to the water cooler because she was extremely thirsty. Her doctor noticed & asked me if she always drank like that, I said that she did to the point of waking up through the night for her sippy cups at least 3 times a night. I then told the pediatrician about the frequent urination & she said she wanted the first urine as a sample the next day. We brought the sample in the next day & when I looked at it I noticed it had no color to it. The pediatrician said that her urine was not concentrating & she sent it out to be tested. I am so thankful to Dr. Constant, without her I don’t know how long it would of went on without knowing what it was. We then began our journey with the doctor’s at Cohen’s Children’s Hospital, we saw an endocrinologist, after testing he diagnosed Taylor with Diabetes Insipidus & put her on DDAVP. Diabetes Insipidus, (DI) is an uncommon condition that occurs when the kidneys are unable to conserve water as they perform their function of filtering blood. The doctor told us there could be a number of different causes for her having DI including head trauma, a growth on the pituitary gland or genetic. Beginning with the year she was diagnosed with Diabetes Insipidus, she underwent an MRI of the brain yearly to watch for any changes with the pituitary gland. Up until March of 2009 all her MRI’s came back normal. In March of 2009 the MRI showed a change & an abnormal lesion on the on her the brain. The word Histiocytosis was mentioned as the reason for the changes on the MRI. Diabetes Insipidus can be diagnosed years prior to Histiocytosis but is in fact caused by it. We were then referred to a neurologist & the hematologist/oncologist.. In March of 2010 she began having some strange neurological symptoms, hand weakness, she could not grip things well – pencils, baseball – as well as dizziness. The neurologist ordered an EEG & while we were waiting to have the test done, she had an “episode” while I was driving the car. Her eyes rolled in her head & she wouldn’t answer me, when she came to she was gagging & didn’t know what happened. After the EEG and a video EEG, she was placed on Trileptal, an anti-seizure medication. Taylor also had to have neuropyschometric testing done. The abnormal lesion on the front part of the brain is Histiocytosis and was beginning to affect her central nervous system. Taylor’s diagnosis is Neuro – Degenerative Langerhans Cell Histiocytosis, (LCH) with Central Nervous System, (CNS) involvement and Diabetes Insipidus. Taylor has had 2 IVIG infusion treatments, which doctors were hoping slows down the histiocytes in her body & stops progression of the disease. She had many side effects from the IVIG infusions & they did not help her. At this point her doctors felt that chemotherapy was our only option. Taylor had her port placed on August 3, 2010 & she began Chemotherapy on August 16th. Her treatment plan began as 5 days of chemotherapy & then 3 weeks off for a period of 1 year. |
|
|
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! |
|
