Kelsie was diagnosed with Neurofibromatosis 1 at age 2 1/2. She was referred to a neurologist because her soft spot hadn't closed by her 2 year well check and she had 4 cafe au lait spots. After her initial diagnosis 7/2012 we ended up at the Cleveland Clinic for a second opinion. After reviewing her records their neurologist told us we had reason for concern, Kelsie had large optic nerve gliomas
that would require frequent monitoring. She had a 2nd MRI in December 2012 that showed the gliomas were stable compared to the 1st MRI from 7/2012. After Christmas 2012 Kelsie started complaining of headaches and saying her eyes hurt a couple times a week. By the middle to end of January 2013 she was complaining nearly every day so we scheduled a visit to the neurologist. He was concerned and wanted us to see the ophthalmologist. Within a week her left eye was turning inward when she looked down and was waking every night crying with headaches. During an appointment with Genetics, they noticed the eye turning in and saw her complain of head/eye pain and called the neurologist for us to be seen that day. Within a week of that appointment we had our appointment with her ophthalmologist and she had had a vision change from her last checkup in late November. We were sent to oncology and the decision was made to start chemo. Kelsie was admitted February 22, 2013 to have her port placed and received her first chemo treatment that night. Treatment was stopped in January 2014 due to an allergic reaction she developed to the chemo. In September 2014 her vision had declined significantly and chemo was recommended again. Her first of 52 treatments is scheduled for September 23.
