By Joshua Fiala
I was 18 years old and about to graduate from high school when my life suddenly changed. I was on my way to pick up my cap and gown for graduation when I lost feeling in my left hand — I dropped my cap — and the side of my face became numb. I also developed a terrible migraine headache, accompanied by vomiting. The symptoms disappeared as quickly as they began.
But every few weeks the migraines would come back, and they were really debilitating. I was going to school part time and working as a lifeguard and day habilitation specialist at United Cerebral Palsy of NYC, and I was very active — I enjoyed biking, unicycling, and snowboarding — and I was learning how to drive. The migraines really got in the way of all that. Finally I had an MRI, which revealed that my brain was hemorrhaging, and that I had a brain tumor. It was diagnosed as juvenile pilocytic astrocytoma (JPA).
My dad had died two years earlier from a brain tumor (a meningioma), and being diagnosed with a brain tumor had become my biggest fear. Doctors told me it was just coincidence, that there’s no genetic connection. That didn’t help me feel any better when my worst fear came true.
My first brain surgeon cleaned up the hemorrhage but he was only able to remove part of the tumor. I had follow-up MRI’s, and a year after the surgery a scan showed that the tumor had begun to grow again.
My mom researched specialists all over the country and consulted with several neurosurgeons about my tumor. Most of them said that they wouldn’t be able to get it all out. We knew we had found the right surgeon when we learned about Dr. Souweidane. He said that the surgery would be a marathon, but he could get the job done.
It really was a marathon. In January of 2012, Dr. Souweidane performed a 10-hour operation and was able to remove 90 percent of the tumor. But he felt strongly that he could get the remaining 10 percent, so performed a second surgery a week later. He got it all!
Three months after surgery I enrolled in the Culinary Institute of America, and since then I’ve worked in several restaurants in New York. I enjoy creating fusion recipes and writing about them. I’ll be 21 this summer and I am going on the Birthright Israel trip, which will be my first experience out of the country. When I return I will be working as a mentor with people with intellectual disabilities as I continue to explore my love of the culinary arts.
I am not yet able to drive or do many of the sports that I once loved, since my peripheral vision was affected by the tumor and the surgery. I am hoping that prism glasses might help. When I get tired, my left side is weak. But when all is said and done, I feel great and am grateful to be alive.
My mom feels confident that she has done everything possible for me and that the long search for the right neurosurgeon was worth it. She says she couldn’t have found a better surgeon in the world to take on the complexity of my kind of surgery. She also says that “not only is Dr. Souweidane a master surgeon, he’s such a nice guy with a great sense of humor.” I agree. It’s amazing to me that someone who saves lives can be so down to earth.
When I went for the follow-up visit right after surgery, I asked Dr. Souweidane how I could thank him for saving my life. He replied, “Make a difference and help others.”
2022 Update: Josh recently celebrated his 30th birthday in the restaurant where he works. He is in excellent health! Read about it in the Fall 2022 issue of the Children's Brain Tumor Project newsletter.