Ask Congress to support the urgent, unmet needs of the brain tumor community. On May 6, hundreds of brain tumor advocates will meet with their members of Congress in Washington, D.C., urging them to fund research and support legislation that supports patients and caregivers. Sign our action alert todayto add your voice and make sure your state and district are represented on our Head to the Hill Day of Action.
Cookie Policy
This website uses cookies that help the website function and that help us understand how you interact with it. Please read our privacy policy for more information.
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.
