Believe in Brooke
Organized by: Madeline Blake
On December 31, 2015, our youngest daughter, Brooke, was diagnosed with a rare form of brain cancer, Diffuse Intrinsic Pontine Glioma. DIPG is an inoperable tumor due to its location in the pons area of the brain stem and also because it has no defined border. Radiation is the only standard of treatment yet not a cure. It will only extend the life for a short period of time. In doing our research, we realized that Brooke's survival is as good as the research we study. Clinical trials would be our only alternative. Before all this, we probably would never have considered going this route as the uncertainty of a trial was too much of a risk. But without any other options, we had to do more research. We found hope in trial conducted by Dr. Souweidane at Memorial Sloane Kettering which partners with Weil Cornell Medical College. For more than a decade, he has been preparing for this trial which allows for treatment to reach the tumor directly without toxicities to the body. For more detail on the trial you can check out www.WeillCornellbrainandspine.org. In doing this research, we also learned that the lack of government funding hasn't allowed for any growth in survival rates. In the last few decades, DIPG survival rates have essentially remained at zero. Private funding has been virtually the only way he has received financial support. Brain cancer is the deadliest of all childhood cancers yet the most under funded. We hope to make a difference and help end pediatric brain cancer. End DIPG!