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Anti-cancer crusader

Roseville mom marks 10th anniversary fighting for increased funding for childhood-cancer research
By: Sena Christian, The Press Tribune
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Keaton Raphael was a precocious child with an old soul. He’d wear shorts and cowboy boots during summertime. He liked to wrestle and play with his younger brother, Kyle. “He was just a cool kid,” said his mom Robyn Raphael. She and her husband Kyle are also proud parents to 10-year-old daughter Kiana, a cheerleader, and 15-year-old Kyle who plays football. “I always think about what Keaton would be like (now),” Raphael said. “He’d be the one of our kids to take on the world and not be afraid of it.” But little Keaton was never able to get there. He passed away in 1998 at 5 years old from a rare form of cancer. After losing her son, Raphael decided to dedicate her life to finding a cure for this devastating disease and providing other families fighting cancer in Northern California with emotional, educational and financial support. She founded the Roseville-based Keaton Raphael Memorial in her son’s honor shortly after his death. In July, Raphael marked her 10th anniversary crusading for increased funding for childhood cancer research. Last month, she traveled to Washington, D.C. to encourage members of U.S. Congress to fully fund the Caroline Pryce Walker Conquer Childhood Cancer Act. The legislation authorizes $30 million a year for five years to childhood cancer research. But an “authorization” is only a promise of funding. “We reminded legislators that the bill was unanimously passed by the (House of Representatives) and that we need to invest in our children,” Raphael said. Since 2003, Children’s Oncology Group doctors have faced a shortfall from the National Cancer Institute, totaling $100 million that they were approved to receive, she said. Life-saving clinical trials began closing in 2007. To compensate for lost funds, the Keaton Raphael Memorial will fund $125,000 in research projects this year alone. The local organization has raised more than $1 million specifically for research since its start 12 years ago. A year earlier, in spring of 1997, Keaton was a happy, healthy kid. But he started to feel pains in his legs and tired easily. One day, Raphael noticed her son sitting in a chair, watching his friends play on the grass. “That made my mother’s instinct say ‘something’s up,’” she said. A doctor diagnosed Keaton with neuroblastoma, an extremely aggressive cancer of the nervous system. The cancer strikes about 650 children a year and has only a 10 percent survival rate. Keaton underwent nine months of treatment, which included seven cycles of chemotherapy, radiation, removal of a tumor from his abdomen and a double stem-cell transplant. His parents called his medicine “magic potion” and they didn’t talk about what would happen if Keaton didn’t pull through, except for one time when he asked about heaven. His mom described it as spending the night at God’s house. Keaton burst into tears and said he didn’t want to spend the night there. He passed away in February 1998. His namesake organization has helped 700 families, who are referred by caseworkers from the eight major hospitals in the area that treat childhood cancer. A recent survey conducted by the organization found that between 65 percent and 70 percent of families served made less than $25,000 a year. “Families, no matter what kind of cancer, have the same kind of needs,” Raphael said. “We can’t meet every need, but we’re trying to keep the guesswork out of it.” Each family receives a “hope chest,” a care package that includes customized cancer information, overnight travel packs, toys for siblings and a personalized fleece blanket. The box also has a journal and a $500 check for food, clothes, transportation and household bills. One of those hope chest recipients is the Potter family from Mill Valley. Doctors diagnosed Casper, the 2-year-old son of Rob and Maria Potter, with stage-four neuroblastoma in March after blood tests confirmed that the blackness under his eyes was due to cancer. Casper started his sixth round of chemotherapy Thursday. Rob Potter said the treatment has gone “amazingly well.” But Maria Potter had to quit her job and Rob is on a paid leave of absence. They travel to Oakland for their son’s treatments — trips that weigh heavy on their pocket books. “You wouldn’t believe the costs associated with having a child with cancer,” Rob Potter said. “They gave us $500 and that was huge for us.” In addition to helping offset costs, Raphael hopes to hire a bilingual family navigator to help families more easily identify local services. “Having a kid with cancer, even with so many people rallying around you, can feel lonely at times,” Rob Potter said. “Knowing that someone else has your back is extremely helpful.” Sena Christian can be reached at senac@goldcountrymedia.com. ---------- Childhood cancer facts · More than 13,000 U.S. children are diagnosed with cancer annually. That means that every school day, another 46 kids — about two classrooms full of children — will be diagnosed. · Each year about 180 children will be diagnosed with cancer in the greater Sacramento area. For more information about the Keaton Raphael Memorial, visit www.childcancer.org, call (916) 784-6786 or e-mail info@childcancer.org. Source: Keaton Raphael Memorial