SAN FRANCISCO -- It's hard to talk about having cancer, especially when you're only 7 or 9 or 10.

Patients at Children's Hospital Oakland use strands of beads adorning their necks and IV poles to tell their stories. There's a white bead for each day of chemotherapy, a yellow one for each week in the hospital. There are red ones for blood transfusions, black ones for the seemingly endless needle sticks, even glow-in-the dark-ones for radiation.

The children wear their beads like badges of courage, heartbreaking visual reminders of their daily struggles to regain their health and the trappings of normal childhood that can be stolen by cancer. Medical personnel say the program _ now in eight hospitals nationwide, including Children's, which began it in April _ is helping children to cope and communicate and their caregivers to understand and empathize.

Seven-year-old Vanessa Wittmer wears her beads in three necklaces that tell the tale of mysterious bruises that turned up at the beginning of kindergarten, of her adorable Dora the Explorer hairdo lost to chemotherapy, of swimming with dolphins in Hawaii on a Make-A-Wish Foundation trip. Finally, a handmade glass purple heart marks the day in December when her treatment ended and she was able to throw all her pills away.

"It's an awesome reminder of how much we've grown as a family, how strong she is, how strong we all are," said Vanessa's mother, Trish Dolan of El Sobrante.

"It's like a baby album. This is one hell of a milestone," Dolan said last week at the hospital as Vanessa counted her beads, 262 in all. "It just can't be forgotten. Our lives have totally changed."

Jean Baruch, a pediatric cancer nurse studying for her doctorate, created the nonprofit Beads of Courage program three years ago at Phoenix Children's Hospital after learning that children who complete cancer treatment are often disappointed that they have nothing tangible to show for it.

She also knew how tough it is for some children to express what they're going through and for nurses and doctors who are busy with daily tasks to step back and consider a child's entire history beyond today's blood draw.

Her research has showed the beads are helping patients communicate better with their caregivers and with other patients, giving them a sense of accomplishment and helping them make sense of their illness and play a more active role in their treatment.

Baruch, 31, said children are drawn to the beads' playfulness, but there's also a serious side.

"There's a healing process of adornment," she said. "Beads have had significance to humans throughout time as symbols of honor and accomplishment."

Nurse Philippa Doyle, who brought the program to Oakland after hearing Baruch speak, said it's helping nurses, too.

"When a kid is screaming and you come in with their bead and they brighten up right away, that helps," Doyle said.

"This is so simple, but it's brilliant," said Heather Fox, a social worker at Children's Hospital Oakland who has watched patients sit in the playroom of the cancer wing and get to know each other by talking about their beads.

"Children (diagnosed with cancer) and their families are entering a world they would never want to be a part of," she said. "If they could, they would run out these doors and never come back. But they can't. This is a way to acknowledge the sacrifices they're going through to get to the other end."

Fox said children can use their beads to teach people that cancer is not a death sentence. That's what Vanessa did when she used her beads for a presentation to her second-grade class.

Children's Hospital sees about 100 new pediatric cancer cases a year. In the most common form, acute lymphoblastic leukemia, treatment typically runs two to three years and cancer doesn't recur within five years in 85 to 90 percent of cases. Cure rates for other types of cancers can be as low as 40 to 50 percent, Fox said.

In cases where a child doesn't survive, the family receives a glass butterfly and the strand serves as a moving memento. The family of one infant who died at Children's draped her beads over her casket. Another mother kept her daughter's beads in a shadow box with her picture.

"The beads become, very literally, something they can hold onto," Fox said.

Baruch also will be starting a pilot program at Children's this spring for siblings of cancer patients, who often feel left out.

Patients say it's nice to have a reward after unpleasant procedures.

"I get something when I get poked or something," said 8-year-old Kurtis Meek of Vacaville, wearing a backward Raiders cap and camouflage pants while antibiotics dripped into a line snaking into his chest.

His loop of beads stretches as long as he is tall, a stunning symbol of his three-year battle with leukemia _ and his relapse just three months before he had hoped his treatment would end.

Adrianna Tucker's strand of beads is relatively short. The 9-year-old East Bay resident was diagnosed Nov. 3 with acute myelogenous leukemia, which is more common in adults than children, after she began tiring while playing soccer, practicing karate or riding her bike.

Since then, she has spent only eight days at home and expects her current hospital stint to last until May or June. The light brown hair that used to reach the small of her back is gone, replaced by pale fuzz above her freckled face.

But Adrianna isn't complaining.

"I'm actually kind of happy I have leukemia. I think God gave it to me for a reason, to save another kid's life," she said while painting a stencil of a butterfly in the playroom. "I'm really athletic and strong mentally. I think he knew I could handle the pressure. Another kid might not have been so strong."

Adrianna said her beads will help her tell her story.

"I want to share the story because of how much courage and bravery it took to do this to my body," she said. "Stories have happy endings, and this one will, too."

 

 

 

(Distributed by Scripps Howard News Service, http://www.shns.com.)