washingtonpost.com
Young cancer patients wear their beads proudly

By John Kelly
Wednesday, December 2, 2009

The four beaded necklaces around Carsten Connolly's neck make the Arlington County 10-year-old look like a particularly lucky Mardi Gras reveler. But his necklaces aren't souvenirs from New Orleans. They're what you might call hard-earned battlefield decorations.

"Each bead is on there for each treatment I've gone through," explained Carsten, who as a kindergartner embarked on a successful 3 1/2 -year fight against leukemia at Children's National Medical Center.

The idea of having kids mark the stages of their cancer treatment through beads started at a children's hospital in British Columbia. What Children's Hospital calls its BEADS program -- Bravery, Endurance, Achievement, Determination, Strength -- began in 2004.

"Carsten was one of our early BEADS supporters," said Lynn Hardesty, manager of the patient and family support program at the hospital's Center for Cancer and Blood Disorders. After every procedure, young patients being treated for cancer, sickle cell, hemophilia and other ailments select the appropriate bead to mark another milestone reached.

"Lime green means Broviac in," said Carsten, referring to the catheter inserted into his chest. "Hot pink means Broviac out. These stars mean a good day. The blue beads mean you're neutropenic -- you don't have enough white blood cells to fight off infection. Yellow are for hospital sleepovers. The panda bear means I'm being treated at Children's."

I asked about a handsome red cube bulging with little dots. "That means a spinal tap," Carsten said. "There's a lot on here."

"What's amazing is the number of stars in comparison to almost no black beads, which are horrible, terrible, very bad days," Lynn said. "That tells you something about Carsten and his family."

Lynn said that when the program started, she didn't offer it to teenage boys. "I was afraid they'd think it was too girly," she said. But then a teenage boy stopped her in the hall with a request: I want to make a necklace, too. One older patient told Lynn: "When I graduate from high school, I'll hang my tassel from my rear-view mirror, but until then I'll put this necklace there."

Each necklace is unique to that patient's experience, a tiny element of control at a scary time. I asked Carsten which bead was his favorite. He spun one necklace in his hands until his fingers stopped at something that wasn't a bead at all. It was a tiny silver bell.

"It means you're done with your treatment," he said.

Helping Children's

Carsten is quite a kid. His first idea for his Make-A-Wish gift was to open a medical clinic in India. He was tremendously affected by seeing the poverty during a family trip there, said his mother, Adrienne.

When he was told that didn't fit the Make-A-Wish criteria, Carsten switched gears and designed a board game that teaches kids about cancer.

"I wanted to have it so there are no winners and no losers," he said. "If you lose, it's, 'Oh, I had a relapse.' No one wants that."

Instead, players move around the board, collecting chips and avoiding the Vomit Monster. The game isn't over until everyone is done with his treatment. Mattel has made 25 copies of the game, called Carsten's Wish.

My wish? It's to raise $500,000 for Children's Hospital by Jan. 8. So far, we stand at $37,735.96. The money will be used to pay the medical bills of children whose families can't afford the care.

To donate, send a check or money order payable to "Children's Hospital" to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To donate online using a credit card, go to http://www.washingtonpost.com/childrenshospital. To give by phone using Visa or MasterCard, call 202-334-5100.

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