Sometimes words are not enough to tell the story of St. Jude Children’s Research Hospital patient Ethan Washburn’s nearly three-year battle with Acute Lymphoblastic Leukemia.
St. Jude Children’s Research Hospital patient Sarah Carroll, 16, of Shreveport, La., was diagnosed with Acute Lymphoblastic Leukemia on July 20. Since then she has collected more than 100 beads from the hospital’s Legacy Bead Program. Each bead represents a medical milestone of the patient’s treatment at the hospital.
(Photo: Lance Murphey)
When this happens, Ethan, 10, of Memphis, uses a string of brightly colored glass beads to illustrate it. Each of the distinctive beads marks a treatment milestone. There are fluted purple beads that represent learning to take medicine, blue triangles for clinic visits, red beads with white polka dots for birthdays.
One bead marks the completion of radiation treatment; another symbolizes a particularly good day; another one signifies the passing of a friend.
These are Ethan’s legacy beads, and he is one of hundreds of St. Jude patients who have participated in the hospital’s Legacy Bead program. Launched in 2009, the program gives patients a tangible way to share their treatment stories, track their progress, chronicle moments of bravery and, in some cases, leave a lasting memento for loved ones.
“It’s almost like a time capsule,” said Shawna Grissom, director of St. Jude’s Child Life program and co-author of the study “Building a Legacy for Children and Adolescents with Chronic Disease” (Journal of Pediatric Nursing, May 2012). “As a patient transitions out of St. Jude, they’ll always have those beads to tell their story – it’s almost like a strand of bravery.
“And for families of a deceased child, it’s something tangible for them to show others, a way to remember that child and a way to help those children know that people will always remember them.”
Missy Washburn, Ethan’s mother, says the beads have played a major role in helping Ethan and his family cope during his treatment.
“These kids know what every bead means, and these beads really mean something to them,” she said. “It gives them something to hold on to through the process.”
There are 55 different beads, and even beads that signify particularly difficult times, such as the Bad Day bead – often added at the patient’s request on a day when things seem particularly overwhelming – eventually become badges of honor.
“They can look at a Bad Day bead and say, ‘OK, I had a really bad day today, but tomorrow’s a new one.’ And it becomes an achievement,” Washburn said. “You think of kids who get trophies and awards for sports and special achievements. This is the same. There’s no bigger achievement than beating cancer.”
The Legacy Bead program is just one component of a larger initiative at St. Jude, the Child Life program.
“Our main goal is to help children and teens cope with hospitalization,” Grissom said. “We are helping them understand the hospital and their diagnoses in age-appropriate settings.”
Each patient is assigned a nationally certified Child Life Specialist who focuses on meeting that patient’s psychological needs and providing clear communication about treatment procedures and what to expect during a time of uncertainty and many changes.
For example, Grissom said, a Child Life Specialist would explain an MRI to a patient on a sensory level – how the MRI bed will feel, how the technicians will be dressed, what else the patient will see, what the patient will hear, what physical sensations the patient will experience.
The Child Life program also offers activities that foster normalization – such as playtime with other patients – and self-expression, such as art projects or even tools if the patient needs to take out some aggression and pound something.
Helping patients and their families build their legacy is another important goal of Child Life. Besides the legacy beads, other such activities might include making a hand mold, journaling or keeping a memory box.
“When families come here, we see it as just a stop in their journey of life,” Grissom said. “It’s not meant to be ‘You stop your life when you get here.’ We celebrate all pieces of their lives.”
Emphasizing a patient’s treatment journey using these types of legacy-building activities is beneficial to patients and their families, Grissom says, because it helps everyone involved hold deeper discussions, express feelings and, consequently, build stronger, more supportive relationships.
For this reason, Child Life also developed a Legacy Bead program just for siblings, allowing siblings to collect their own milestone beads for various activities and emotions.
Washburn said she appreciated this aspect of the program because it has helped Ethan’s twin brother Cooper keep his identity in this family story and share his own accomplishments and feelings.
As for Ethan, he now has several beads that are particularly significant to him, Washburn said. There are the beads that spell his name, of course, because they personalize the experience. Then there’s the starter bead, which is the St. Jude logo bead.
“It means so much to us because everyone here has become family, even the people who work in the cafeteria,” she said.
And finally, there’s a barrel-shaped silver bead that shines just a little brighter than the rest. It’s the No More Chemo bead.
Ethan is in remission now, back in school and playing sports. And while his lengthy string of storied Legacy Beads will always have a special place in his home and heart, this year it’s getting the royal treatment, Washburn said.
“It’s going to be the garland on our Christmas tree,” she said.