A new program helps young patients along their cancer journey
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Six-year-old leukemia patient Rebecca Kisiel's colorful string of beads detail the early weeks of her cancer treatment.
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Unless you're a survivor, it's impossible to understand the relentless challenges of cancer treatment. In addition to hurdles like chemotherapy sessions, patients must also endure a constant barrage of uncomfortable tests and procedures. For children, the incessant poking and prodding can become overwhelming. To help young patients treated through Dana-Farber/Children's Hospital Cancer Care (DF/CHCC) stay positive and face future treatments, resource room and Child Life Specialists Ingrid Dahlin, Sara Mastrofrancesco, Summer Menefee and Amber Soulvie of Children's Hospital Boston, Julie Gauguet of Brigham and Women's Hospital and Martha Young of Dana-Farber, created Beading Each a Different Story (BEADS).
BEADS offers children a special glass bead for achieving a treatment milestone. For example, a yellow sun represents a radiation session, while a smiley face sporting a bandana signifies hair loss. When strung together, patients have a visual record of their cancer journey. More than 100 patients have participated in BEADS since its September launch, and its impact is visible. "They really feel like badges of courage," says Jennifer Kisiel, whose 6-year-old daughter, Rebecca, was recently diagnosed with acute lymphoblastic leukemia. "Rebecca's string validates what she's endured."
BEADS is free for DF/CHCC patients, thanks to donations from 8-year-old Sarah Norton's family and friends. Sarah received a stem cell transplant in January and spent a lot of time with Soulvie during her stay. "Even though Sarah is out of Children's now, we can't get Children's out of us," says her father, Patrick Norton. Jessie Doktor, a 9-year-old who battled leukemia for six years, was one of the first to use BEADS. Her string represented each experience she had since her initial diagnosis in 2001. "BEADS gave Jessie a personal way to characterize her experience and collapse it into the size of one small piece of art and self-expression," says Gail Doktor, Jessie's mother. |
