Have you ever fought something as deadly as brain cancer and won? Have you won such a battle twice? I have, and this is my story.
It all began when I was three. Everyone thought I was a perfectly healthy little boy, until suddenly one day, that changed. It was a beautiful snowy day and the snow was shimmering white. My mom, baby brother, and I went outside to play, unaware of the breathtaking events about to unfold.
I was playing rough outside — running, pulling a sled with my little brother on it, and throwing snowballs. This caused my blood pressure to spike, which caused me to have a seizure. This seizure caused me to not only be unable to put together a sentence, but soon would have me unable to breathe.
My parents called 911. The police arrived first and immediately administered oxygen. The ambulance rushed me to the hospital and, after a CT scan, doctors discovered a large tumor in my brain.
I was put on a breathing tube and sedated until they could perform surgery several days later. I was tough, but it probably helped that I did not know the full severity of what was going on. On the day of surgery, I was anesthetized, and then my mom carried me to the operating room. The surgeon reported that he thought he removed the entire tumor, but little did he know… .
A year and half later (when I was five), during a follow up MRI, the doctors found a smaller mass in my brain. This tumor (or, as I called it, a “head owie”) was in the same spot as the first tumor. I needed another surgery to remove it.
This second brain surgery went well. The surgeon put in 2 titanium plates and 4 screws in place of my skull. I thought it was cool and declared I was 2% robot and 98% human. After surgery, I was lively and on the hospital Xbox in less than an hour. In fact, I was kicked out of the hospital 48 hours after brain surgery because the nurse said, “there are sick kids who need their rest” and I was running/driving down the halls on toy cars.
After surgery, there was a tug of war over my brain tissue. In short order, my tumor tissue was analyzed by specialists in Minnesota, Maryland, and Tennessee.
Given that my tumor type (supratentorial cortical ependymoma), in the location it was found, was exceedingly rare, it wasn’t immediately clear how to treat me at recurrence. Doctors initially recommended proton radiation, but they weren’t sure if it was necessary. My mom even asked five-year-old me if I thought I should go to the “zap doctor” (radiation oncologist) and my reply was, “Silly Mommy, no one knows but God whether my head owie is gone. There could be some hiding on the top of my brain or bottom of my brain. We should go to the zap doctor!” After full analysis of my tumor, my doctors recommended proton radiation.
Since there was no proton radiation center in Minnesota, my family and I had to temporarily move to Indiana to go to the “zap doctor.” But, before heading to Indiana, I had to have a quick surgery to have a port placed in my chest.
The toughest aspect of daily radiation for me was not being allowed to have food or water before treatment. This was because I had to be put to sleep for daily treatment. This treatment was very frequently in the afternoon and was usually delayed even later on because of constant machine malfunctions (it broke down more than a McDonald’s ice cream machine). Sometimes, I would beg for water and not receive it and then not get breakfast until 4:00 p.m.
I do, however, have many good memories from radiation, like having my cousins visit me, getting a toy from the toy shelf from the radiation center every Friday, ringing the end-of-treatment bell, and having a party to mark the end of radiation. Another thing I loved about radiation was Panera Bread night (Jill’s House, where all the kids getting treatment stayed, was given all the leftover Panera Bread treats that did not sell at the end of the night).
After arriving home from radiation treatment in Indiana, I had to have surgery to have my port removed. Given all the times I played too hard and had my port ripped out of my chest, I was very glad to get it removed.
I am happy to say that it has been more than 8 years since I finished treatment for brain cancer. I feel proud that I overcame this very hard time and am fortunate enough to tell you my story. I am thankful that I had the best doctors in the world and was strong enough to beat this very dangerous disease. I have been blessed to participate in organizations, such as HopeKids and Make-A-Wish, that brighten the lives of struggling families. I hope that many sick kids battling cancer will read my story and be encouraged to keep fighting.