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Blake’s Story

Hi Everyone!!


I am 15 years old with Neurofibromatosis  with an optic glioma (brain tumor).  I have had 12 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 15yrs. 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


Hi everyone,

Well, it has been a very busy few months since I last updated in December.  In February I woke up with a pressure headache and my mom called into the surgeons office.  I went in to the ER the next day where we saw my surgeon and together we decided to place the pressure monitor in to see what my pressure was.  By the time they did this that night, my headache was starting to go away and my pressure were pretty normal.  No shunt revision needed. They watched me over the next 2 days and when my pressures remained low, I was discharged Friday morning and was on a plane Friday night to go to the Cayman Islands.  That was a pretty nerve wracking trip especially for my mom.  She didn't know if I would have a problem down there and have to fly home or not.  Luckily I didn't and we ended up having a great trip.  I have had a couple of normal headaches since then but overall I felt really well.  I just graduated from middle school and I am off to high school in the fall.  I will be attending Arete Academy in Santa Monica and can't wait for this change.  I also just turned 15!!!  

My summer officially started a week 1/2 ago and I left to go to camp right after.  Both Aidan and I left for 6 days to go to Camp Ronald McDonald up in Idylwild.  I love this camp and it makes my mom  feel better knowing it is a medical camp fully equipped with doctors and nurses.  We did archery, went fishing, horseback riding, camped out in tee pees, and just had fun.  On the 3rd day however (last Thursday), I complained of a headache right after lunch and went to the MedShed.  Knowing my history, they did a complete neuro evaluation and determined I was fine so they gave me some Tylenol and then it was rest time for all campers in their cabins.  I fell asleep for about 45 min. and when it was time for the counselors to get the kids ready for the next activity, they couldn't wake me up.  They finally got me to stand up but I kept my eyes closed, my head down, and played with my shirt.  I didn't acknowledge anyone around me and wouldn't talk or answer any questions. The camp director called my mom and I was taken to the MedShed again for another neuro evaluation.  They even tried to get me to talk to my mom and I wouldn't.  My mom and the camp director decided to let me rest in a dark room and see how I was feeling later that day.  I guess that did the trick, because shortly after, I was feeling a little bit better and was able to camp out that night at the tee pees. The next day was a good day too but the next morning they had a hard time waking me up again and after seeing the doctor in the MedShed, he said he couldn't say for sure that I wasn't having a seizure.  My mom and the doctor agreed that it was better if I left camp and was evaluated in a hospital.  My mom picked me up and took me straight to Children's Hospital ER.  There we met the neurologist on call who admitted him so she could do a 24 hr. EEG on him.  He did not have an episode while hooked up to the EEG but they did see abnormal irritability in his right temporal lobe. Because of this and because they didn't capture one of his episodes on the EEG, they also can't say for sure that I didn't have a seizure up at camp but we now know that I am at a higher risk of having seizures. The neuologist also said that all of the dizzy spells I have had (which aren't very often anymore) were probably all seizures. The plan now is to watch me and document any weird episodes I might have and to have a rescue medication on hand at all times now that we can give me if I do have a seizure. 

This battle never seems to end!!!  But we will keep our heads up high and our determination strong. 



Jeani McCammon
By Jeani
You're right, the battle never seems to end. Just keep fighting it every step of the way. Much love and prayers! Hope you have a great summer.
The Horner Family
By Valerie Horner
Dear Blake,
We are glad that you had fun at the camp while you were feeling okay and sorry it had to end before it was scheduled to. But every single time you go into the hospital for something, it is recorded and discussed by the doctors and in the long run, it is helping YOU and the many others as information is gathered and work is done on a cure. You are such a Trooper, a NF Storm Trooper!
Love you, The Horners
Sonny Southworth
By Sonny Southworth
Blakester, you never cease to amaze me. You are so grown up now and a capable young man. It always makes me sad to hear when you have NF issues and I send prayers up right away. I will miss watching you at LHS now. Off to high school you go..but I watched you grow up since 2nd grade and you have always been a wonderful spirit. I sure hope that because of all your trials, they find an end to NF. Wouldnt that be awesome if it were one of your 'issues' that sparked the end of NF! Could happen. YOu are a trooper, and I feel privileged to know you and your mom.
Cindy Renie
By Cindy Renie - Grace & Audrey Tim Lawlor
I am so thankful for Ronald McDonald House and all they are and do for kids. Grateful that he could go to camp with the medical assist if and when he needed. We continue to pray and lift up Blake and your family in prayer. Love to Blake from Renie Lawlors.
Andrea Epinger
By The Epinger Famiky
Sending you so much love and healing thoughts Blake!