×

CaringBridge Needs Your Help by December 31st

Make a gift to CaringBridge in honor of Blake and you’ll help even more people surround each other with love and support this holiday season. Donate Now

Blake’s Story

Hi Everyone!!

 

I am 14 years old with Neurofibromatosis 1 with an optic glioma and 3 astrocytomas.  I have had 10 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 14yrs. 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.

Latest Journal Update

LA Opera Adoption

Hanging with the crew
Hanging with the crew
Hi everyone,

Medically I have been doing pretty well.  I have had headaches on and off since my last surgery in June but nothing bad enough to send me to the hospital.  Just taking them one headache at a time.  I did start testosterone about 3 months ago to push me into puberty since I am not producing any puberty hormones on my own. I will have to wait to see my endocrinologist in a month to do more blood work to see if the levels are working for me so I will keep you posted on that.  Other than that, I really don't have anything to report on. Looking forward to 2015 and hopefully a surgery free year for once.  I will definitely try my best on that one. 

On a fun note....About a month ago, I was "adopted" by the LA Opera through the Friends of Jacklyn Foundation. WOW!!!  They invited us to see a dress rehearsal of La Traviata, gave us tickets to see their performance of Florencia En El Amazonas a couple of weeks ago and then invited me back a couple of days ago to watch the same opera from back stage.  They presented me with my own LA Opera badge, official Opera polo shirt, and an opera poster.  My mom and I then sat up on a cat walk and watched the show from stage right. I met the lead that night, the maestro, the entire cast, stage managers......everyone who works on the show.  It was amazing.  They have made me a part of their family and make me feel so special.  Here are a few of the pictures we took that night.  Thank you LA Opera for adopting me!!!!