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rocco's story with dIpG

Rocco was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on July 7th 2012. The week leading up to diagnosis we noticed him stumbling, drooling, and all around "off". We took him to Children's Hospital of Philadelphia emergency room where a CT showed an inoperable brain tumor. He was admitted to the Pediatric Intensive Care to have confirmation MRI in the morning. It was confirmed that he had DIPG, one of the deadliest brain tumors for children, with a survival of 0 within 3-12months. We were told to take him home until radiation could be started but beyond that there was nothing else that could be done, completely unacceptable for a 5 year old child. We did 6 weeks of radiation and by the time it was finished Rocco could walk, talk and was back to his old self. We just had to believe he was a miracle. But reality of his diagnosis was always in the back of our minds and we needed a plan. Rocco then participated in a clinical trial at Sloan Kettering Memorial Hospital in New York. He was the 4th child to participate but the hope was the dosage was doubled and would help stop the tumor from growing. We never got any additional shrinkage only from original radiation. We spent the next couple months enjoying our family, traveling to beautiful islands, we celebrated Rocco's 6th birthday, the holidays all while Rocco remained in school because he loved it. In April of 2013 we noticed some of the symptoms returning. Our biggest fears were once again confirmed, the tumor was progressing. We re-radiated the tumor off trial at CHOP and noticed slight improvement. We did participate in another trial at Helen DeVos Childrens Hospital in Michigan. It was a simple trial involving swallowing 1 pill once a day with no side effects. We went there one day a month for 3 months until the tumor had progressed so far it was obvious nothing was helping. The summer was long and hard as we watched Rocco slowly decline. The last couple of weeks were especially brutal. This tumor takes everything from the body all while the child is trapped inside.  Rocco passed away September 28th 2013.