I am 13 years old with Neurofibromatosis 1 with an optic glioma and 3 astrocytomas. I have had 5 brain surgeries and am trying my hardest to fight this monster inside of me. With your love and support, I know I can do it!!!
My name is Blake Robinson and I am 13yrs. old. I have NF1 (Neurofibromatosis Type 1 - a genetic disorder) with and optic chiasmal glioma that was diagnosed at the age of 18 months. On Friday March 16, 2007, I was also diagnosed with acute hydrocephalus due to tumor growth and had a shunt and port-a-cath put in a week later. I started chemotherapy that following week. I was on that until May 1, 2008 when I had a CT scan that showed a cyst on my tumor that had doubled in size in two months and I had hydrocephalus again. On May 15, 2008 I under went a craniotomy to take out the cyst and part of the tumor. I was in the hospital for 10 days, went home and 6 days later returned to the ER in shunt failure. On June 2, 2008 I had another surgery to revise my existing shunt, went home the next day to return to the ER 5 days later with acute hydrocephalus again. This time the other side of my brain was under pressure and on June 8, 2008 I had another surgery to place a 2nd shunt. In April 2009, the doctors found two more tumors in my pelvis. On November 19, 2010, I had a 5th surgery to replace one of my shunts. On July 27, 2011, I had an EEG that showed seizure activity. The doctors don't know if that activity is due from the NF itself, from the tumor or from any one of my surgeries. This is not going to stop me!! My energy and my smile are here to stay!!! Check out my journal and you can see what I am up to every day.