Ben’s Story

October 15th, 2007 was a day my husband and I will never forget. I had run my first marathon the day before and was on a high. Ben was having a MRI done on his brain. Nothing to worry about we had been told by my doctor, “it will be fine.” Little did we know how the day would end.

Ben was 5 ½ years old and a month into kindergarten. One day in early October he came home with a headache–nothing to worry about. He felt fine a short while later. Next day after one hour of school he again had another headache. I took him to the doctor who told me it was a sinus infection and gave him antibiotics. For the next 10 days Ben would have repeated headaches in the morning that didn’t really last long. On the second visit to the doctor a few days later, I even questioned if it was a brain tumor. To this day I don’t know why the words came out of my mouth; I was told I was being paranoid.

Finally after five visits to the doctors (I think I finally bugged them enough) they decided to do a routine MRI. The morning of the MRI we were all happy, Ben had been promised a toy if he stayed still in the machine – which he did. We left (of course they don’t tell you what the have just seen) we had a fun morning shopping for his new toy and doing errands. On the way home my doctor called me into his office. Then, I heard the devastating news that a parent never wants to hear. “It’s very serious. Ben has a massive brain tumor.” These words will haunt us forever.

From that point on things moved very quickly. Within an hour we were sent to see an oncologist who explained what was going on. We were then sent down to Cedars-Sinai Medical Center in Los Angeles and met with Dr. Danielpour who is the Director of Pediatric Neurosurgery. After many hours of MRIs, sur- gery was scheduled for the next day – October 17. Who would have thought that 48 hours ago our lives would change so much.

The tumor was apparently in a good place (left cerebellum). They were able to get the tumor out completely which was fantastic news. There were risks, of course, but Ben came out of surgery with no lasting damaged done to his brain. A week later we were home. The tumor was diagnosed as a pilocytic astrocytoma–the best you could hope for. Given the size of it he may have been born with it.

Friends were incredibly kind to our family when we got home. We live in a small community in Solvang, California and people made us dinner and held bake sales and donated money to help with medical bills. I was so grateful that I was determined to give back one day by doing well for other people in similar circumstances.

The day Ben was diagnosed with his tumor, friends were calling me to find out how I did running the marathon. I just cried telling them about Ben. When I got home from surgery friends started to ask if I would ever run another marathon. I immediately said I would but I wanted to raise money for a brain tumor foundation.

I signed up to run the San Francisco Marathon which would take place early August 2008. A few months before while training I started to research who I could raise money for. I looked at a lot of different organizations but kept coming back to the Childhood Brain Tumor Foundation. This was it, it felt right. I started contacting friends and family and by the time I ran the marathon I had raised over $4200. I have

never felt as proud as I did running through the finish line in 4 hours, 3 minutes knowing what good I had done. My husband, daughter Bailey and Ben were waiting for me at the finish line, and I put the medal around Ben’s neck and gave him the biggest hug.

Today it is January 2010. This week Ben had another “clear” MRI so life is really good. It’s been two years now and I am grateful for every day. I still run (it’s the best therapy!!) and completed another marathon last October.

Written by Fiona Gould, Ben’s mom

This article was written for the Childhood Brain Tumor Foundation, Germantown, MD.