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My Story

Hi Everyone!!

 

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.

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Kim Robinson posted a new journal entry.

Hi everyone,So sorry we didn't keep you updated.  I did go in on January 29th to have the pressure monitor placed.  My surgeon came out of that surgery and told my mom ... Read more

Katherine Miller signed Blake's Guestbook.

You are really a trooper- wow what an ordeal you have been through.  Your mom is sure good at moving into action!hope you can get some help with all the low levels and ... Read more

Kelly Malone signed Blake's Guestbook.

Hi Blake,You have been a champion!!!Lacey and I are with you all the way...Stay strong!Love, Kelly and Lacey Read more

Lori Hobbs signed Blake's Guestbook.

Thanks Blake & Family for the update!You all have been through SO MUCH! We continue to pray for all of you and a 100% healing for Blake. May God continue to BLESS you ... Read more

Sonny Southworth signed Blake's Guestbook.

You never cease to amaze me Blakester!  Keep on keepin on son!hugs,Miss Sonny Read more

Tammy Parisi signed Blake's Guestbook.

My prayers are always with you Blake and family!!  I will be thinking good thoughts for you Blake!  You are such a strong young man! Read more

Cindy Renie signed Blake's Guestbook.

Dear Blake. Thanks for writing and your update. We will pray for you this week. I pray that the pain gets figured out and completely goes away. Your positive attitude ... Read more

Kim Robinson posted a new journal entry.

Again…..sorry we haven't updated in awhile.  The past few months have been pretty good.  I saw my ENT again in December and the hearing loss I had earlier in the year ... Read more

Kim Robinson posted a new journal entry, "Blake's update".

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 ... Read more

Cindy Renie signed Blake's Guestbook.

Hi Blake. its me Cindy (Grace and Audrey's mom)i hope you had a good summer. i thought of you guys often and thought you were probably chasing bears in Mammoth. perhaps ... Read more

Kim Robinson posted a new journal entry.

We are home!! Blake is feeling pretty good. In a lot of pain at the incision site but happy to be home. Our stay wouldn't be the same without some more bumps in the road ... Read more

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