At Doernbecher, every bead has a story. Strung together, these beads take on an even greater meaning: helping oncology patients conceptualize, cope with and share their cancer journeys.
The Story Bead Program began at Doernbecher in 2003 and is supported by the Doernbecher Child Life program.
Every year, there are about 250 newly diagnosed cancer patients treated at Doernbecher. If a child is interested in participating in the Story Bead Program, they are given an opportunity to capture their own medical journey – one bead at a time.
Each “starter string” begins with a bead symbolizing the patient’s unit and letter beads spelling out the patient’s name. From there, they add beads that represent their procedures, their milestones and their emotions along the way. Some examples:
- A crab bead: Making someone smile
- A purple heart bead: A transfer to the ICU
- A blue bead: A sleepover in the hospital
- A light green bead: A good day
- A yellow bead: A bad day
Patients can also receive beads for specific procedures, “pokes” and transplants.
The Story Bead Program is intended to record the milestones of the treatment process. It can be a long and difficult journey, and the beads are a tangible way of acknowledging the challenges along the way.
“There is a personal transformation that happens when the joy of creating becomes larger than the pain,” said Peggy Adams, a Child Life specialist who helps oversee the program. “The Story Beads become a badge of patients’ accomplishments.”
Some of the beads were added by request: For example, a patient suggested adding the clock bead to symbolize patience. Another patient asked for a frog bead to celebrate learning to swallow pills.
Another patient suggested replacing the “hair falling out” bead, which used to be small and brown, with a big, bright orange bead with a smiling face to represent something that is a “BIG deal.”
When they go back to school, patients receive an apple bead to commemorate the milestone. Some even bring their story beads with them to show-and-tell to help their friends and classmates understand what their treatment process was like.
Many patients continue to add beads to their story when they come in for visits after therapy has finished.
“Our patients make their stories as they go,” said Kathy Perko, a pediatric nurse practitioner who helped bring the program to Doernbecher. “The beads help tell every individual child’s story.”
Sometimes, it helps grown-ups understand the child’s experience better, too. Kathy remembers a 6-year-old patient who was discussing her “bad day” beads, one of which represented her leukemia recurrence.
“She said, ‘One time I was crabby with my mom. Another time my cancer came back. And another time I just had a rough day.’ Her way of thinking about what a bad day was is pretty humbling – it really puts things back in perspective,” Kathy said.
5 responses to “‘Story Beads’ help tell oncology patients’ stories at Doernbecher”
What a lovely idea! I always enjoy reading about the ways that Doernbecher supports its patients and encourages them to express themselves.
can you make a complete list of what each bead represents.
Thanks for your comment, Zeke! I don’t have the complete list but will check with Peggy and Kathy and pass along your contact information. –Lisa
Is it okay to mix the beads?
Can you explain what you mean by “mixing the beads?” Happy to get an answer for you!