Robyn Raphael: Unstoppable advocate

Beads of Courage

One cancer center program being funded by the Keaton Raphael Memorial Foundation is Beads of Courage, which began in the Children's Hospital as a collaboration between the Child Life Department and the outpatient nursing staff in the pediatric infusion room.

Each child patient is provided with a bead strand with his or her name. As treatment progresses, the child receives a unique, handmade glass bead to commemorate each procedural milestone. The result: a beautiful strand of beads that "tells" each child's story.

Beads of Courage provides children with something tangible to map the progress they make in their recovery, serving as a lasting reminder of their courage past and present, and builds important coping skills and resilience.

"It's more than just a bead," says Raphael. "It's an outward symbol of everything the children go through. It has the power of turning something mundane and hurtful into something empowering."

The program delivers a year's supply of beads, storage containers, membership cards and posters for hospital patients and manuals for the staff. Two members of the Beads of Courage training team teach hospital staff the details of the program, qualifying them as "Beads of Courage Ambassadors." If a child dies, his or her family receives a special, hand-made butterfly bead to honor that child's memory.

Child Life Manager Diana Sundberg said the program helps children feel connected to others going through the same process.

"It gives them a sense of camaraderie," she says, "and helps them realize that they're not alone."

Childhood cancer is a journey no parent expects to take. And it’s a journey no parent should travel alone.

Robyn Raphael talking to family "To date, we’ve helped more than 850 families with financial assistance, resources and education. We really try to deal with the full journey: the beginning diagnosis, treatment, survivorship or loss."

~ Robyn Raphael

That’s the mantra of Robyn Raphael, a pioneering advocate for families enduring the arduous, emotionally wrenching and isolating journey through a child’s cancer diagnosis, treatment and, sometimes, death.

Raphael, 46, of Roseville, Calif., knows firsthand the pain and confusion a family endures when a child receives a diagnosis of cancer. She lost her 5-year-old son, Keaton Raphael, to neuroblastoma in 1998 after a nine-month battle with the illness that included treatment at UC Davis Cancer Center and a stem cell transplant in Boston.

The loss of Keaton was a turning point for Raphael on many levels, she says. It forced her to dig deep and find the fighting spirit within herself that now energizes her to help others, including many families at UC Davis Cancer Center, moving through the painful journey of childhood cancer. Raphael also now advocates on the state and national levels for increased funding for childhood cancer research.

"After we lost Keaton and we came home, it became more about fighting back and doing something," recalls Raphael.

Raphael, who holds a master’s degree in public policy administration, has been "doing something" about childhood cancer ever since. As founder of the Roseville-based non-profit organization, the Keaton Raphael Memorial, Raphael and a cadre of volunteers and employees have made immeasurable contributions to UC Davis Cancer Center and Children’s Hospital. The organization has donated nearly $600,000 for childhood cancer research and vital services and cash assistance to struggling families maneuvering through the day-to-day rigors of childhood cancer treatment.

"To date, we’ve helped more than 850 families with financial assistance, resources and education," says Raphael, a petite blond with seemingly boundless energy. "We really try to deal with the full journey: the beginning diagnosis, treatment, survivorship or loss."

Keaton Raphael Memorial’s Childhood Cancer Family Navigator Program links families to the resources they need to stay afloat financially and emotionally during this trying time.

Accompanying a child through the maze of cancer care takes not just an emotional toll, but a financial one as well. Not many people are aware of the financial drain of the disease, says Raphael.

Even if a family has health insurance, the cost of caring for a child with cancer adds up. Frequent trips to the hospital for chemotherapy or other treatments can result in higher fuel bills, time off from work to stay at a child’s bedside, and increased child-care expenses for siblings who need care while parents are at the hospital are just a few of the added costs.

Keaton Raphael Memorial’s Childhood Cancer Family Navigator Program links families to the resources they need to stay afloat financially and emotionally during this trying time. The non-profit receives many of its referrals from caseworkers at local children’s oncology centers or through word of mouth. Families may be offered anything from gas cards to help pay for fuel to additional funds to make the rent or mortgage. At Christmas, some families are given gifts to help defray holiday expenses.

The Family Navigator Program also provides families with the names and phone numbers of other families on the same journey.

"What I was committed to was linking families to resources," says Raphael, who worked as an administrator in a city recreation department early in her career.

Cherie Trout’s family is one of the many families getting through their cancer journey with the help of Raphael’s non-profit. Trout’s 2-year-old son Cooper Cochran is undergoing cancer treatment at UC Davis Cancer Center. The single mother has two older children at home, and feared that the frequent trips to the cancer center clinic would cause her to lose her job.

"Your world is upside down. You feel as though you are the only one on earth going through this. You find out you are not."

~ Michael Jeffries

"I had been at my job for less than a year, so I didn’t qualify for leave under the Family Medical Leave Act," Trout says. "I had to be by his bedside, and I had to make the trip four days a week."

The non-profit provided Trout with a $500 check to help defray costs associated with her son’s treatment. Members of the group also found a local car dealership to donate labor to help repair Trout’s car.

"Anything I need, I call," says Trout.

One of the signature gifts given by the Keaton Raphael Memorial is a hope chest, filled with books and gifts for all family members coping with the anxiety induced by a cancer diagnosis. If a child succumbs to the disease, the family is given a bereavement box with helpful books, as well as names and phone numbers of people to lend support.

Cooper Cochran One of the signature gifts given by the Keaton Raphael Memorial is a hope chest, filled with books and gifts for all family members coping with the anxiety induced by a cancer diagnosis.

"They sent us a hope chest," says Trout. "It was great for the older kids to not feel left out of the process."

Michael Jeffries, whose son William was diagnosed with cancer five years ago, remembers coming home one day after one of his son’s treatments.

"I got home and there was this great big box on the front porch," says Jeffries. "I had no idea… I sat there and cried. I was so touched by it."

The box was filled with books, gift cards, gas cards and homemade blankets, says Jeffries. But it contained so much more, he adds, remembering the referrals to other families who had gone through or were going through the same thing.

"Your world is upside down. You feel as though you are the only one on earth going through this," says Jeffries. "You find out you are not."

Jeffries’ son is now 17 and cancer-free, but he lost much of his eyesight from the cancer treatments. William attends the California School for the Blind.

"He’s a very positive kid," says Jeffries.

Cherie Trout and son, Cooper Accompanying a child through the maze of cancer care takes not just an emotional toll, but a financial one, as well. Not many people are aware of the financial drain of the disease.

The Keaton Raphael Memorial also raises money for cancer research through donations, sponsorships and co-sponsorships of various fund raisers, such as the Chipping Away at Childhood Cancer Golf Tournament, and the St. Baldrick’s hair-shaving event. The non-profit also is a partner in the Beads of Courage program, which awards specific beads to cancer survivors and their families at certain milestones along the cancer journey. Those milestones could be a first treatment of chemotherapy or recovery from a surgery.

Raphael’s organization also provides beads, paints and other crafts materials – as well as a cadre of volunteers – for the annual holiday party put on at the cancer center for young patients and their families.

Raphael also is California team leader and parent advocate for CureSearch for Children’s Cancer, an organization that visits state legislators to advocate for increased funding for childhood cancer research. Raphael and others claim the efforts of such advocacy groups were instrumental in the 2008 passage by Congress of The Caroline Pryce Walker Conquer Childhood Cancer Act, a landmark bill signed by former President George W. Bush that earmarks $40 million a year for five years to childhood cancer research.

Raphael says her advocacy efforts around childhood cancer are a vital part of her journey through Keaton’s illness and passing.

"It was part of my healing journey to jump in," she says. "It felt like my way of fighting back."

Raphael has been an inspiration to Trout, who says she’d like to form her own organization some day to help other single mothers like herself cope with the difficult diagnosis and treatment of a child’s cancer.

For more information on the Keaton Raphael Memorial visit www.childcancer.org.