For the children
|Alexis Von Aesch, 13, unwraps a blanket made by a Keaton Raphael Memorial volunteer.|
Following the death of their son from cancer at age 5, Robyn and Kyle Raphael resolved to channel their grief into helping other children and families battle the disease.
Eight years later, the nonprofit organization the Roseville couple established in their son's name stands as a testimony to the difference dedicated individuals can make and as a tribute to a brown-eyed boy who loved to make swords out of sticks, dress in superhero costumes and wear cowboy boots - even on the hottest summer days.
Since 1998, the Keaton Raphael Memorial has raised more than $800,000 for pediatric cancer research and programs in Northern California, including more than $300,000 for UC Davis Cancer Center and UC Davis Children's Hospital. The organization has also provided direct assistance — in the form of gasoline cards, phone cards, restaurant certificates, homemade blankets, information packets and cash — to more than 100 Northern California families whose children have undergone cancer treatment in Sacramento.
“After Keaton died, in the early days of grieving, my husband and I didn't leave the house,” Robyn said. “It was second by second, minute by minute, hour by hour. Then I realized I'd better get busy and do something.”
A former municipal government staffer, Robyn had no professional background in either fundraising or advocacy. But she proved a quick study. Starting small, she talked to parents at her younger son's preschool, addressed the Roseville Chamber of Commerce and shared the story of Keaton's nine-month battle with neuroblastoma with countless individuals.
Friends stepped forward, offering legal, Web and graphic design assistance for the new nonprofit. Family members rallied. A golf tournament in Southern California organized by Robyn's brother-in-law provided early seed money for the Keaton Raphael Memorial. Robyn's dad single-handedly sold all the tickets for the memorial's first golf fundraiser in Roseville. And as Robyn took her early steps into national advocacy — a 1998 march on Washington in support of childhood cancer research — her sister was at her side.
“This organization created itself, is all I can say. It was built by a lot of people with sincere compassion for children and families,” Robyn said.
A family heals
As the Keaton Raphael Memorial grew, the Raphaels healed. On Jan. 1, 2000, the couple had a daughter, Kiana, now 6; her brother, Kyle, is 12. The elder Kyle continued in his career as a superintendent for the City of Sacramento Parks & Recreation Department. Robyn devoted herself full-time to daughter Kiana, son Kyle and the Keaton Raphael Memorial.
|Robyn Raphael presents UC Davis Cancer Center director Ralph deVere White with a check to name a pediatric playroom after her late son. "Keaton's Corner" will be located on the ground floor of the Cancer Center's planned clinic expansion.|
Still working out of a home office, Robyn today puts in 50-hour weeks as the paid executive director of an organization with chapters and volunteer boards in two cities, Roseville and Reno. The memorial now has two employees: a full-time family navigator based in Reno and a part-time assistant in Roseville.
These days, the Keaton Raphael Memorial sponsors its yearly trademarked “Chipping Away at Childhood Cancer” golf tournaments in both cities, acts as a local organizer for the national St. Baldrick's fundraising campaign for childhood cancer research, serves on the UC Davis Cancer Center's Capital and Endowment Initiative steering committee and helps to host an annual holiday party for pediatric cancer patients at UC Davis. The organization's latest project is ChildCancerJourney.org, a traveling awareness campaign.
Robyn also serves as one of 42 team leaders nationwide for the CureSearch National Childhood Cancer Foundation, which supports childhood cancer research. As team leader for California, she coordinates the organization's advocacy efforts in this state. In addition, she leads the California delegation on its annual trip to Washington to take part in CureSearch's Gold Ribbon Days lobbying effort.
Ted Zwerdling, associate professor and chief of pediatric hematology and oncology, works closely with Robyn to identify unmet needs among pediatric cancer patients and their families at UC Davis Cancer Center and UC Davis Children's Hospital.
“Some people refuse to accept tragedy,” the pediatric cancer specialist said. “Instead, they see it as a challenge, as a calling, and simply will not be defeated by it. They even seem to gain strength by what has happened to them, and put that strength to work so that maybe the future will be better. “I once heard Robyn say that she cannot stop children from getting cancer, but that she doesn't have to sit around and just let it happen. She can do something about it. To be sure, she has and she is. Her importance as an advocate, in caring for families, and in planning and developing programs for children and adolescents, cannot be understated,” Zwerdling said.
Money raised by the Keaton Raphael Memorial has purchased toys, books and family resource materials for children and their parents, provided pediatric pain management training for physicians and nurses at UC Davis Children's Hospital and funded a $50,000 pediatric playroom for the Cancer Center's planned expansion. The playroom will be named Keaton's Corner.
The organization's latest gift to UC Davis — $92,000 generated from the 2006 St. Baldrick's celebrations — will be used to support research into the psychological and socioeconomic impacts of childhood cancer on patients and families. Last year's St. Baldrick's events coordinated by the Keaton Raphael Memorial raised $40,000 for UC Davis. That money will provide first-year funding for a Pediatric Hematology and Oncology Fellowship Program within the Department of Pediatrics, to begin in 2007.
The Keaton Raphael Memorial also continues to make direct grants to families facing childhood cancer, a service that sets it apart from other cancer organizations. The grants help families with the nonmedical expenses that accompany a diagnosis of pediatric cancer. Referrals are made by hospital social workers.
“It's research that will give us a cure, but we have to take care of families along the way,” Robyn said. “There are no requirements about how our family grants are spent. It can be new clothes for a child who no longer fits in anything because of swelling from steroid therapy. Or it can be a good time for the family; to me, that's an important use. Sometimes memories are what you're left with.”
Helping patients with cancer
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Richille and Brandon Von Aesch received a grant last year, after their then-12-year-old daughter, Alexis, was diagnosed with Ewing's sarcoma, a type of bone cancer. The Keaton Raphael Memorial provided the Von Aesches, who live about 40 miles east of UC Davis Medical Center in the town of Cool, with a packet of information resources, a $250 cash grant, a phone card and a gas card. During one of Alexis' chemotherapy appointments, Robyn hand-delivered a blanket made by Keaton Raphael Memorial volunteers.
For the Von Aesches, the gifts were a comfort.
“Robyn's importance is that she knows what's going to be necessary. As a newly diagnosed family, you don't know what's ahead,” said Richille, who quit her job at Home Depot so she could be at Alexis' bedside during the eighth-grader's monthly three- to five-day hospital stays.
“It was such a relief to get her start-up information packet, and such a comfort to know there's someone like her out there.”