You’ve Come a long way baby (Jake’s Story)

YOU’VE COME A LONG WAY, BABY. The slogan—from a cigarette ad in the 70s—is now, thank goodness, very much outdated. But it can be used in a different context. Our son, Jake, has come a long way from when he was a 3-month-old baby in 1990 with a rare malignant brain tumor, to where he is today as a 30-year-old man. Yes, he has never spoken, and he is significantly developmentally delayed, but he has overcome many obstacles that most take for granted. Plus, he is the happiest person we have ever met.
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We will never forget meeting the late Dr. Fred Epstein, Jake’s surgeon. Leaning back in his chair with his cowboy boots on his desk, Fred confidently told us that he would likely be able to remove Jake’s tumor. Meeting Dr. Jeffrey Allen was also unforgettable. He laid out the facts. Jeff, despite all his experience, had only treated three kids with Jake’s tumor: one had passed, one was ok, and the other was somewhere in between. (Making Headway originated when Dr. Epstein, along with Dr. Allen, began the Institute for Neurology and Neurosurgery.) Jake was often a patient at NYU Hospital. The halls and rooms then were dingy. But that was where we met Maya Manley. She warmly greeted us and then suggested that we attend a meeting. That was the beginning of our partnership with Maya and Ed.

Over the past 30 years, advances have been made in the treatment of pediatric brain and spinal cords tumors—but baby, we still have a long way to go. Today, there are more than 28,000 children living with a brain or spinal cord tumor. Over 2,500 children are diagnosed every year (seven every day), and they are currently the leading cause of death among all childhood cancers! Pediatric brain and spinal cord tumor achievements have not kept pace with other areas of oncology, where great strides have been made.

Every day when we are with Jake, we are reminded how lucky we are! We want many more children and their families to feel as lucky (and even luckier). While Jake was never able to go to college, how great is it that among the myriad things that Making Headway funds, we grant college scholarships for brain tumor survivors. Who knows, maybe one of them will become a leading scientist or philanthropist in this fight. In the meantime, help us now, by contributing to Making Headway. It would be the best possible 30th birthday present for Jake (and us).