Dawn Weinberger, Freelance Writer

Children's cancer group helps victims, families

By Dawn Weinberger

A diagnosis of pediatric cancer is always devastating, especially for the parents of a young victim. Regardless of the prognosis or availability of effective treatment, the mere possibility of losing a child to the disease can leave a mother and father terrified, not knowing where or whom to turn to. Regina Ellis has been down that road. In 1993, when her 3-year-old daughter Alexandra was diagnosed with neuroblastoma, a rare and fatal form of pediatric cancer, she and Alexandra's father, Cliff Ellis, were bewildered by the lack of resources for families in their situation. They felt alone and lost in a clinical environment that focused on treating the illness without addressing the seemingly simpler things, like bringing a smile to a sick child's face or giving parents a shoulder to cry on.

By the time Alexandra died on May 7, 1995, Regina Ellis knew it was up to her to provide that missing link. Within days of losing her daughter, she was brainstorming ideas with her husband (the couple has since divorced) and friends, making plans for what would become the Children's Cancer Association.

"The idea came from seeing gaps in services and thinking, 'I can help create [a] solution,'" Regina Ellis, 39, said. "I knew I could ... bring people together who could help children like my daughter."

Nearly 10 years later, the CCA has grown from a tiny, Portland-based grassroots charity to a national organization with a $2 million annual budget, 20 staff members led by Executive Director Ellis and more than 800 volunteers, including Alexandra's siblings, Zach, 12, and Kate, 8. CCA programs such as Music RX, which brings live music into hospital rooms; Chemo Pal, which provides children with compassionate friends to talk to; and DreamCatcher Wish, which helps fulfill the dreams of cancer-stricken children, are now a regular part of life for young cancer patients receiving treatment at Doernbecher Children's Hospital and Emanuel Children's Hospital. The CCA also publishes Kids' Cancer Pages, a comprehensive directory of resources, and later this year will open the Care Cabin, located in Pacific City on the Oregon Coast, a getaway spot designed specifically for the families the CCA serves.

To date, the CCA is most active in the Portland area, but it is starting to serve more families nationwide, and beginning to forge ties with out-of-state hospitals.

To say Ellis achieved her goal would be an understatement.

At first, "I thought it would be a beautiful thing if we could bring some music, share some resources and do a few things," she said. "I didn't really envision this."

But those who know Ellis can't imagine any other outcome. Portland securities dealer Tim Phillips, a CCA board member, calls Ellis a "remarkable visionary" who always looks for the positive in otherwise negative situations.

"Regina is always thinking one step ahead," Phillips said.

Perhaps even more remarkable is the fact that she has devoted her life to a cause that requires constantly reliving her own painful loss. "There are many days that are just bad days, but I am a realist, so I can face things head on," said Ellis, who lives in Northwest Portland. "In all our lives we face challenges, and I think it is how we learn to respond that allows us to be a positive force in the world."

While her friends and colleagues are captivated by her optimism, Ellis credits her success to her assertiveness and to her experience as a college instructor and marketing executive. That background, plus the inspiration provided by the courageous and spunky Alexandra, gave her what she needed to take her idea and run with it, she said.

Whatever the source, local families are just happy the CCA exists. Mark and Karen Wilson, whose 2-year-old daughter, Claire, is battling brain cancer, say they feel grateful to have the CCA in their local community. Though Claire is now in remission, the family has spent many days and nights at Doernbecher. When she was unconscious for an entire month last winter, Music RX was there for her. And when they found out Claire didn't meet the Make-A-Wish Foundation's eligibility requirements (recipients must be at least 30 months old -- Claire had yet to reach her second birthday), the DreamCatcher Wish program stepped in to provide a custom-built play structure for their backyard, complete with a baby swing for Claire, a toddler swing for her brother, Luke, and two adult swings for the parents.

But the part they appreciate the most -- Ellis herself.

"When Claire relapsed last October, Regina called and gave us her cell phone number," Mark Wilson said, adding that Ellis told them they could call her any time, day or night. "For her to take time out of her busy schedule just for us, that was really special."

The CCA "is very important because they fulfill the emotional and psychological and social needs of the children and the family that we cannot do ourselves," said Dr. Linda Stork, a pediatric oncologist at Doernbecher.

Ellis is even receiving national recognition for her efforts. Last year, Working Mother magazine selected her as the recipient of its annual Agitator award, and the Points of Light Foundation, an organization that promotes volunteerism, honored the CCA with the National Family Volunteer Award.s

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