Taylor Ryan is an 8 years old East Islip girl and has Langerhans Cell Histiocytosis, (LCH) with Central Nervous System, (CNS) involvement and Diabetes Insipidus. At the age of three and a half Taylor was diagnosed with 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. Once diagnosed with diabetes Insipidus she was placed on DDAVP everyday. The doctor told us there could be a number of different causes for her having DI including head trauma, a problem with 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 subtle thickening of the pituitary stalk & an abnormal lesion on the left frontal lobe of the brain. The word Histiocytosis was mentioned as the issue and the Ryan’s world was changed forever. Since the time Taylor was diagnosed she has had approximately 9 MRI’s, 4 X-Rays, 1 Full Body X-ray, 3 Nuclear Bone Scans, a TON of doctor appointments and blood work to many times to count. 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 a “petite seizure”. After the EEG and a video EEG, she was placed on Trileptal, an anti-seizure medication. They felt that the abnormal lesion on the front part of the brain was Histiocytosis and is now beginning to affect her central nervous system. They cannot biopsy the area because the location of the lesion is in a dangerous place. The doctors had a tumor board meeting at the hospital and decided that the best course of action for Taylor was that she begin some type of treatment. Taylor has started IVIG therapy which doctors are hoping slows down the histiocytes in her body, she will have one treatment every 4 weeks until 3 treatments are done. Once the last treatment is done she will have repeat MRI & bone scan, then we will begin her chemotherapy. We are praying that the IVIG therapy & chemotherapy will be enough to put this into remission & she will not continue to have further neurological problems. We don’t know what the future will hold for Taylor but we have learned to take one day at a time, cherish EVERY moment & never lose faith. All this and Taylor still comes to soccer while a big “Kool-Aide” smile on and fights to overcome her pain and works hard each and everytime.
