"This new approach represents a ray of hope for families facing the diagnosis of DIPG. This rare brain tumor has been uniformly fatal, made all the more heartbreaking by its propensity to strike very young children. The tumors are inoperable due to their ill-defined borders as well as their position in the delicate pons area of the brain stem. Radiation has been the standard approach, but it is not a cure and usually extends life only by a short time. Some 200 to 300 children in North America a year die from DIPG - usually within months of their diagnosis.
Unlike other critical diseases of childhood, DIPG has suffered from a lack of funding that has meant a complete lack of progress in survival rates. Over the past few decades, survival rates for medulloblastoma have reached 70 percent; for acute lymphoblastic leukemia the rate is now 85 percent. Over that same time, survival rates for DIPG have remained essentially at zero, as major foundations directed their support toward more common conditions. It is Dr. Souweidane's hope that this innovative clinical trial will be a major first step in creating a survival rate for DIPG for the first time."This is potentially HUGE for the DIPG community. I am praying that this works the way they are hoping. I also pray for all the families who are accepted into the trial. No family should have to experience what we've been through.
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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
