Survivor Stories

Hannah will be 12 on April 18, 2007. On August 19, 1995 she was diagnosed with a Trigeminal Schwannoma. On September 27,2005 in a 10 1/2 hour surgery it was completely removed at Children's Hospital in Boston.
Our story begins in the spring of 2004 when Hannah, who had been sleeping through the night since she was 9 weeks old (yes weeks old), started waking up with horrible headaches. It kept happening so we went to the Dr. He couldn't find a cause. Since Hannah had a pallet expander at the time, we went to the dentist and the orthodontist. Neither found any reason for the headaches.

Hi, my name is Joel.

The following is my story about my experience of having a brain tumor. Until about 6 months ago, I had really never done any research on what I had nor did I really care to know. Maybe not knowing its severity, rarity, and symptoms was the best thing for me.

The summer of 2003, before my senior year in high school, was a fun and exciting period of my life. I had a great job interning with my father, and I spent a lot of time with my friends, but I was hiding a secret. On the outside, I managed to maintain a composed façade. However, on the inside, I was experiencing a tempestuous storm, completely turning my world upside down.

Jessica S., that is my name. I was born April 20, 1988 at Lincoln Hospital in the Bronx. I lived with my mother, father, sister, who is only two years older than me, and brother, who is two years younger than me. When I was two, my father died in a car accident. My family then moved to Florida. We lived there for a year. One Thanksgiving, my grandmother burned her leg with turkey oil. We came back to New York to see how she was doing and we ended up moving back. We lived with my Aunt Mercy and her two children, Luis and Jennifer, for one year.

Sophia was a regular 3 year old child whose only exposure to the medical world was at her immunization appointments and well child checks, all this soon changed when Sophia started to get headaches which hurt so bad that no matter how much or how strong the pain reliever was, the pain did not subside. It got so bad that her family loaded her up and drove 4 hours to the nearest Children's Hospital where she was diagnosed on a Thursday with a tumor and by that next Monday she was undergoing an eight hour surgery to remove the tumor.

December 24,2006, we took my then 2 year old into the ER for a CT scan after months of taking her to the pediatrician for severe headaches. Each time we went she was diagnosed with some type of virus. The news we received changed everything." She had a HUGE mass on her brain, and it doesn't look good." Those were the exact words of the ER doctor. She went down to a 6 hour emergency surgery where they removed all of the SPNET tumor. She has had 16 weeks of chemo, 3 stem cell transplants, and 28 rounds of focal radiation.

In 2003 David was diagnosed with glioblastoma. Up until that day he was rarely even sick with a cold!

I was diagnosed with a brain tumor at the age of 13. I was crying every night, and I was afraid of dying. I didn't want to leave my family so soon. The doctors said that I will be alright. When my mom , dad and I scheduled my surgery, I made sure it was around my baton twirling, kickline and soccer so i will be ready to go back in to the season. The surgery took place December 13, 2006, on my older brothers birthday. The surgery was a big success. Now I take two medications . I am happy that it wasn't cancer, and now I am back to the way I am for now.

Our son was two when we were told he had a polocysticastrosytoma brain tumor. Now are son is ten. He has had partial removal, 14 months of chemo, and in '05 he underwent proton radiation for two months. We have had insurance issues since we started. We have fought our Medicare office for years. But you always must stay focused on our child. WHEN YOU ARE TALKING WITH THESE DOCTORS ALWAYS REMEMBER TO GET THAT SECOND OR THRID OPINION. THIS IS YOUR CHILD.

On December 24, 2006 my 2 year old daughter was taken to the emergency room after waking up with a massive headache. I had known something was wrong for the prior 3 months. She had been complaining of headaches. After a scan of the brain it revealed a large mass on the brain. On Christmas she had surgery to remove the mass, which was a PNET brain tumor. She went through 16 weeks of chemo, and three mini stem cell transplants, with 6 weeks of focal radiation. She is currently doing well.