On December 19, 2016 a week after his brain biopsy, Fynn was diagnosed with a rare brain tumor known as DIPG. This stands for Diffuse Intrinsic Pontine Glioma. Effectively a stage 4, incurable cancer with the lowest survival rate of all pediatric cancers. DIPG affects 2-300 kids each year and has a 5 year survival rate of <1%. The median overall survival of kids diagnosed with DIPG is approximately 9 months with radiation and 4 to 6 months without.
I, and my family and friends are riding the Courage Classic and for Wheels of Justice in particular because they raise funds that go directly to the CCBD (Center for Cancer and Blood Disorders) at Children’s Hospital. The CCBD has been instrumental in helping our family cope with the devastating news we received. They have offered support and information crucial in helping us put the pieces of our lives back together and forging a path forward. Without their care and support we would be lost. In fact, the clinic has a Fellow on staff who is working on brain tissue collected from Fynn’s biopsy in December. We have hope that the Children’s CCBD, partnered with other clinics across the world will someday find a cure for DIPG and all of the devastating cancers that take our children away from us much too soon.