My 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.

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Kim Robinson posted a new journal entry, "We are free!!".

Just left the hospital and are on the way home. I can hear the shower and our beds calling us!!! Read more

Kim Robinson posted a new journal entry, "We are going home!!!".

The monitor is out. We are going home!!!! His pressure has remained low so they are sending him home and to the neurologist in a couple of weeks for headache management ... Read more

Kim Robinson added a new photo.

Kim Robinson added a new photo.

Kim Robinson posted a new journal entry, "Waiting".

Good morning,We have been patiently waiting in the hospital and I am trying not to stare at the ICP monitor numbers.  Overall, his numbers have been really good ... Read more

Kelly Malone signed Blake's Guestbook.

Hi Blake!So glad you are resting and healing from your surgery.Lacey and I are sending our love every moment...Love, Kelly & Lacey Read more

Kim Robinson posted a new journal entry.

Blake did great in surgery. It didn't take very long and now the waiting begins....to see what his pressure does over the next 3 days His pressures have been really low ... Read more

Kim Robinson posted a new journal entry, "Surgery #13".

Blake was just taken back to the OR to have the pressure monitor put in Of coarse Blake started coughing and wheezing yesterday so it was touch and go whether or not they ... Read more

Kim Robinson posted a new journal entry, "Surgery #13".

We saw my neurosurgeon on Friday to get the results of the MRI I had done last week. All of my blood vessels look perfectly normal and healthy and the tumor is ... Read more

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