Taylor was our first child born on December 6, 2001at 9 lbs. 3 oz& 21 & half inches long. As an infant & toddler she had many ear infections, episodes of high fevers, bad diaper rash & cradle cap. At the age of about 3 we brought her to her pediatrician 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 & the pediatrician said that her urine was not concentrating & she sent it out to be tested.
We then began our journey with Cohen’s Children’s Hospital, we saw an endocrinologist, & he diagnosed Taylor with Diabetes Insipidus & put her on medication. 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 & showed that she now had an abnormal lesion on the left frontal lobe of her 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. They decided to monitor the lesion because it is in an area that is very dangerous to biopsy. In March of 2010 she began having some strange neurological symptoms, hand weakness, she could not grip things well – pencils, baseball, migraine type headache – as well as dizziness. After a video EEG, which showed abnormal seizure activity, she was placed on Trileptal, an anti-seizure medication. We also had to then go for neuropyschometric testing. After a lot of testing we found out the abnormal lesion on the front part of the brain was Histiocytosis and was beginning to affect her central nervous system. Taylor’s diagnosis is Neuro Degenerative Langerhans Cell Histiocytosis and Diabetes Insipidus. In May & June of 2010 Taylor had IVIG infusion treatments, which unfortunately did not help her. The doctors decided to begin a chemotherapy treatment plan which was 4 days of chemotherapy every 3-4 weeks for 12 months. The treatment plan was adjusted many times throughout those 12 months.
Once Taylor began school again in September 2011, we noticed after a little while that she was having a lot of difficulty with reading & that has always been easy for her, she was failing some tests. She also seemed to become restless in class during reading time. We decided to take her to Dr. McClain, an expert in the Histiocytosis field, he suggested doing a spinal tap as well as a PET scan of her brain. The spinal tap came back ok & the PET Scan showed that her cerebellum & brainstem had decreased uptake showing that they are working at a slower rate than the rest of her brain. Together with her doctors here they started her on an oral chemo, which after a month she had to discontinue use because the side effects were to much. We are at a point now where she has had another spinal tap, she had neuropsych testing which showed many defects, which goes with the ND LCH diagnosis. The doctors have decided to try another oral chemo called cytoxan to see if that will work in slowing the progression of this disease. The scariest part for us as her parents is they honestly do not know whether this will help her or not.
Taylor will be starting another treatment plan on November 12, 2012 which is IV chemotherapy 4 days on then 3 weeks off and that cycle will be repeated for 6 months - 1 year. She also currently takes at least 5 different medications a day, goes to numerous doctors appointments and has many tests. Taylor has not let any of this bring her down, she LOVES soccer & being active. She gets very upset when she has to miss school or sports. She doesn’t want to be treated any differently than her friends & she will push herself to keep up with everyone, even knowing when she gets home she may not feel so great. She loves to be with friends whether it is playing sports, going to school or just hanging out. Her friends & community are very supportive of her. We don’t know what to expect in the future, but we pray that this treatment plan works & that at the end of it this disease will be in remission. Taylor is one of the strongest 10 year olds 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.
To stay up to date on Taylor's story please visit her Carepage ~ www.carepages.com/carepages/TaylorR