Legacy Bead Program helps children cope with cancer
The St. Jude Child Life Program addresses the challenges facing many of the hospital's young patients with its Legacy Bead Program, where each bead marks a milestone in a child's treatment journey. The Program also offers journaling and memory boxes for patients and families to help them chronicle their journeys and build legacies.
“This is a learning-to-take medicine bead,” Kayla Dehnert, 8, of Novato, California, explains, fingering the bumps of a bluish-lavender bead and working her way down the long strand. “This yellow bead is the change-the-bandage bead, and the tiger bead is the losing-your-hair bead.” She is most anxious to get the bead for completing chemotherapy, which is silver and barrel-shaped.
Kayla is one of hundreds of St. Jude patients who have participated in the Legacy Bead program since it began in 2009. She uses a string of beads taller than she is to tell friends and family in northern California about life as a St. Jude Children's Research Hospital patient.
The patients and their families use the beads as a tangible way to illustrate their journeys with 55 glass beads that are as unique as the children who collect them. The patients receive vivid green cylindrical beads for blood transfusions; sapphire round beads for lumbar punctures; tear-drop beads in assorted colors for homesickness; and blue, triangle-shaped beads for clinic visits. Additionally, beads mark triumphs such as the completion of radiation or chemotherapy or challenges ranging from cancer's return to the death of a friend.
“Some patients use the beads to express how they are feeling about their treatment journeys and a tangible way to share with siblings or friends what happened today or what treatment involves,” explained Shawna Grissom, Child Life director and the study's corresponding author. “Other patients will have the beads as a memory of what happened during this step in their journey of life and some patients will leave the string as a memory for their families to have and pass on.”
Grissom stated that the program gives staff another opportunity to talk to patients about their care, such as why needle sticks are necessary or why a patient might need another MRI. The bead program allows patients and staff to celebrate accomplishments and it reinforces the staff's role in every child's journey, explained Grissom.
Because the legacy bead program was so popular, the hospital added a similar program for patient siblings. Brothers and sisters can also earn beads, which come from contributions such as serving as bone marrow donors or traveling to St. Jude with their families. Grissom explained that, “Siblings play such a huge role in supporting the family and patient throughout treatment. We want to make sure they are not forgotten.”