Temozolomide. He only participated for one month, the headaches continued to increase due to hydrocephalus and on February 8th he underwent brain surgery for a Third Vent Omaya Reservoir placement to relieve the fluid build-up. In March 2010 Benny was enrolled in an experimental clinical trial at the NIH in the Bethesda, MD which involved surgery to deliver chemotherapy direct to the tumor. Due to circumstances beyond our control, twice the surgery was aborted and so we took that as a sign that we should not continue to pursue this option. Benny was enrolled in his 4th clinical trial on March 31st 2010, a Phase I Study of Pazopanib. His nineteenth MRI on 28th April 2010 showed the tumor had shrunk slightly from this treatment. However, over the next 3 months the tumor increased and on August 4th Benny started his 5th clinical trial, a Phase I Study of IMC-A12 and Temsirolimus. During June and July Benny's physical abilities began to deteriorate, he was unable to walk by mid-July, his speech was impaired and he could no longer swallow food by the beginning of August. On August 6th he aspirated and spent two nights in the PICU at Children's Memorial Hospital* in Chicago. After this episode it was clear to us and Benny that we were all no longer willing to endure any more medical intervention to try to stop the tumor.
Despite his deteriorating physical condition Benny's spirit and zest for life was always present and he was able to attend Kindergarten at Cherokee Elementary School in Lake Forest for 2 days. Sadly only a few days after he achieved this wonderful milestone he passed away peacefully at home, in bed with all his family, early on the morning of September 8th, 2010.
Benny, like his sisters Isabella Bradman and Lily Marsh, was named after a great Australian cricketer, Richie Benaud, in anticipation that he too one day would grow up and develop similar personal character traits that would assist him in life. Richie Benaud was widely considered one of the great characters of the sport both during his playing days and in commentary afterwards. Charisma, tenacity and most importantly a humorous approach to life are Richie’s great qualities. Although Benny only lived five and a half years, in his short life he displayed all these great qualities. He showed us how to handle what had been thrown his way with a good deal of tenacity, stubbornness and a cheeky smile that made us laugh until we ached and feel that everything would be OK.
Fly Benny, fly.....
If you would like to read our journey with Benny from diagnosis you can visit our CaringBridge site and read our journal:
Welcome to Benny's World
On Friday January 18th, 2008, Benjamin Benaud Watters, "Benny", was diagnosed with a brain stem tumor (Diffuse Intrinsic Pontine Glioma - DIPG).
It all began back in early November 2007 when his left eye started to cross. It was thought he had Strabismus, glasses and patching were prescribed. The eye failed to improve, and so he had an MRI on January 18th, 2008. We were completely shocked when the tumor was discovered.
After diagnosis Benny participated in a Phase II Clinical Trial at Children’s Memorial Hospital* in Chicago, USA. Benny completed 6 weeks of radiation combined with an anti-cancer medicine called Motexafin-Gadolinium (used as a radiosensitizer) on March 11th, 2008. His first MRI post treatment on April 24th, 2008 showed a 25% reduction in the tumor. The following five MRI's up until March 23rd, 2009 showed the tumor as stable. An MRI on April 20th, 2009 showed an increase in the tumor so Benny started a second clinical trial on May 13th, a Phase II Study of Nimotuzumab. For the next 7 months Benny tolerated the Nimotuzumab very well, however, the tumor continued to grow slowly and in December 2009 he started to experience more symptoms from the tumor including headaches. January 11th, 2010 Benny was enrolled in his third clinical trial, a Phase I Study of ABT-888 and