Ava’s Story

At 14, I was diagnosed with epilepsy and a brain tumor. Before they knew about the brain tumor, and I was just told about the epilepsy, I had thought that it couldn’t get worse. Two weeks after being diagnosed with epilepsy, they called and told us about the brain tumor, a rare one, a ganglioglioma. Gangliogliomas make up only 1-2% of all brain tumors. 

Being told it was benign, two months later, I had a checkup MRI, and that day changed everything. I was told the tumor had grown rapidly, and I needed surgery as soon as possible. While it was considered benign at first, when a ganglioglioma has a rapid growth rate, it becomes malignant. Brain cancer, I let that sink in. 

I had asked my surgeon, “Do you feel comfortable doing the surgery?” He replied, “Well, Ava, I don’t think I’ve ever been asked that before, but yes.” And I had all my trust in Dr. Hauptman to remove the tumor. He made me feel so comfortable that I wasn’t worried about surgery. I had the surgery, and everything went well. 

Since then, I have been living life to the fullest and now know that life can change in an instant. About a year after surgery, I started having these weird episodes, and I didn’t know exactly what was happening. I went in for an overnight EEG study, and they confirmed they were absent seizures. They put me on seizure medication, and all was good. The meds helped, and I was seizure-free for a year, so I got off the meds, but this meant I had to lose my license for six months. To a 17-year-old, that’s the worst news you could possibly hear. I pushed through and, six months later, was able to drive again. 

I was still getting monthly MRI checkups for the tumor, and about four years later, I went in expecting just the normal MRI, but it wasn’t normal. The tumor had grown back. I had thought after the first surgery, I was done. This wasn’t the case; I needed another surgery. I, of course, had Dr. Hauptman because I wouldn’t do this anyway without him. I was scared for this surgery, unlike the first surgery, this time I knew exactly what to expect. Even though I was scared, I went in, had the surgery, and made it out just fine. The tumor was all the way resected, and I was able to make a speedy recovery as college was just one month away. I couldn’t have done any of this without the very best, Dr. Hauptman. Now I’m 19, nine months since the second surgery, and I wouldn’t change it for the world. Being forced to be resilient at such a young age has taught me so much.

TAGGED WITH: ganglioglioma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.