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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.
I am so sorry we haven't updated the site in awhile. Time flies....can't believe it is almost Halloween!! Where did the year go? Well, here is what has been happening in my world....
So, you know that I had hearing loss in one ear in January following my surgery. Well, after I had the hearing test done, I went to see an ENT and he confirmed that I have conductive hearing loss in that ear. He will be repeating the hearing test, which will be next week, to see if it is staying the same or getting worse. If it is staying the same, he will just watch me and repeat tests every so often. If it is getting worse (which I don't think it is) then we talk about plan B. Soon after that appointment in the spring, I had my regular eye exam and found out my vision has declined. They don't believe it has anything to do with the tumor so now I have glasses. When I had a second eye exam 3 months later with my glasses......it was the best exam I have ever had so I guess the glasses are working. Plus everyone says I look handsome in them. Soon after that exam, some regular blood work came back abnormal so some extensive testing was done to check my growth hormones. I was given a blood pressure medication that lowers my blood pressure so I would fall asleep. They then took blood at regular intervals to check my levels since you make and secrete growth hormones while you sleep. It was all fine and dandy until they couldn't wake me up. The doctors and nurses figured I just needed time so they left me alone (but kept a very close eye on me) and I woke up with a little nudge from my mom an hour later. Boy am I sensitive to medications. My doctor says he has never seen someone fall into such a deep sleep during this test. Anyway, I "failed" that test and am now diagnosed with growth hormone deficiency. They won't treat me with anything because it might make the tumor grow so I get so excited whenever I do grow. At least that is not life threatening....just something I have to deal with.
I just started 7th grade and so far so good. I love all of my teachers and I think this year is going to be great. I was on the honor roll all last year and my goal is to do the same this year. I had a great summer full of activities, camps and trips and I have been feeling really good lately.
On Sunday October 20th, TEAM BLAKE is walking again in the 8th annual LA NF Walk on the CBS Studio Center Lot. If you want to register or donate, go to: