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When visitors first see the colorful, stringed beads that line the walls of Sophie Pettengill's bedroom, their significance beyond décor is not immediately apparent. In fact, they represent the most challenging time of the 5-year-old's young life.
The images depicted on the sparkling stones represent different milestones in Sophie's care at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, where she was treated as a toddler for acute lymphoblastic leukemia. Each blood draw (red circle), anesthesia administration (penguin), and other clinical event is recorded, along with fun moments like a trip to summer camp (flip-flops). Multiple stones denote repeat procedures.
All together, they form a diary of Sophie's cancer experience. Although her active treatment ended in July 2012, she and her family still look at the beads often as a reminder of how far she's come. They helped her get through 25 months of chemotherapy, steroids, lumbar punctures, and other regimens, and are now helping answer the questions that emerge as she matures.
These are among the goals of the BEADS (Beading Each a Different Story) Program, created by child life specialists at Dana-Farber/Boston Children's. The initiative offers young patients a fun way to chronicle their treatment, and something to look forward to each week. Given strings and beading tools to start with, children glean a catalog during clinic visits and select beads corresponding to their latest therapies. When they next come in, in many cases, the beads are waiting for them.
"It's a nice reward experience for the kids when new beads arrive, but it's also a badge of courage," says Martha Young, MS, CCLS, program manager, Patient and Family Education at Dana-Farber/Boston Children's. "Kids do so many different things with them; some hang them from their IV poles, some use them as garlands on their Christmas trees, and some have parents who take them to the jeweler to adapt them into necklaces and bracelets."
However they are used, the beads can give patients the strength needed to endure the peaks and valleys of treatment – and serve as a bonding tool for young patients of different ages, backgrounds, and nationalities.
"I've had many patients ask for their beads immediately after a difficult procedure in the treatment room," says Laurel Anderson, MS, CCLS, a child life specialist in the inpatient oncology unit at Dana-Farber/Boston Children's. "The beads can be wonderful incentive to help kids take their medications, complete their physical therapy treatment, and get through the tough stuff. They also connect children and families on the unit and in the clinic – the beads become something that they have in common."
Since cancer can also have a profound impact on the brothers and sisters of patients, a BEADS for Sibs program was developed by Dana-Farber/Boston Children's staff, as well. Ava Pettengill, Sophie's older sister, says that "it's cool to get a bead for so many different things, like every night away from my parents or for being strong. When my friends ask what it's like to have a sister with cancer, I sometimes take out my beads to tell them the story."
Julia Pettengill, Sophie's mother, wasn't sure that the beads would be a good idea when first told about them. She's since changed her mind. "I thought they would bring up too many negative emotions," she says. "But they are a true representation of the cancer experience. It's intense, but it's also colorful and beautiful."
To learn more about the BEADS Program, contact Martha Young at firstname.lastname@example.org.