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Research
The St. Jude Legacy Beads Program offers patients a creative way to chronicle their treatment experiences.
Tyler Murphy has endured more operations, needle sticks, chemotherapy treatments and medical procedures than most people experience in an entire lifetime. Because he is only 2 years old, Tyler may remember blessedly little of his battle with the rare disorder called Langerhans cell histiocytosis. As a result, his mom, Lindsey, is creating a visual symbol to ensure that one day her son understands the magnitude of his treatment.
Lindsey and Tyler participate in the Legacy Beads Program at St. Jude Children’s Research Hospital. This activity allows patients to collect colorful, glass beads that represent their treatment experiences. Children net one bead for each event: a square, orange one for physical therapy; a green, cone-shaped bead for a CT scan; silver for a final chemotherapy session; gold for remission. During the past year, the hospital has purchased more than 90,000 beads for the program; if placed end-to-end, the string of baubles would extend longer than six football fields.
Child Life Specialist Cara Sisk says St. Jude created the program specifically to meet the needs of families. Participants receive special beads emblazoned with the hospital’s logo; pieces of string; and square, ceramic beads that spell out their names. Then they begin amassing their unique collections.
“If they visit the clinic three times in one day, they get three blue beads,” Sisk says. “Eventually they can say, ‘This is how many times I went to the clinic.’”
The Legacy Bead activity is only one of numerous offerings sponsored by the St. Jude Child Life Program. Child Life helps minimize the stress and anxiety associated with treatment and hospitalization. One way that Child Life specialists help children cope is by allowing them to express their feelings and chronicle their journeys. Some patients create scrapbooks or take photos; others tell their stories through journals, videos or art projects. Begun in April 2009, the Legacy Bead program provides an additional avenue for expression.
Although some hospitals offer bead programs, most offer a limited number of options.
“At other hospitals, one bead might represent four or five different activities,” Sisk says. “We wanted our program to be more customized to St. Jude.” More than 500 patients now participate in the program, which offers nearly 50 different beads.
It’s no surprise that Paola Flores collects them. After all, this 7-year-old appreciates all things sparkly—dangly earrings, bright fingernail polish, pretty dresses. Nearly a dozen bracelets encircle her slim wrists, softly jangling and rattling as she moves. Although Paola lost both eyes to a cancer called retinoblastoma, she adroitly identifies her favorite Legacy Beads by shape, size and texture.
“This triangle bead is for a needle stick,” she says with a smile. “It’s sharp and pointed like a needle.”
As her hands wander down the necklace with practiced ease, she pauses at a round, yellow bead.
“I got this one for changing the dressing on my leg,” says Paola, who is now receiving treatment for the bone cancer osteosarcoma. With maturity that belies her years, Paola explains the significance of the beads she finds most interesting. “I strung them myself,” she proudly declares.
St. Jude families find novel ways to display their Legacy Beads. Some fashion strands that can be hung from the ceiling; others adorn strollers, purses or backpacks with the baubles.
Teens say the beads give weight and heft to their stories, providing a tactile method for demonstrating the breadth of their experiences. “It gives them a concrete way of sharing their stories,” Sisk says. “It helps bridge that gap back to home, as they talk with people who don’t understand what they’ve been through.”
During the past year, 16-year-old Carissa Barrett has accumulated more than 450 Legacy Beads.
“At first I really wasn’t sure about whether I wanted to participate in the program,” admits Carissa, who hails from Pennsylvania and is receiving treatment for adrenal cortical carcinoma. “But as time went by, I started to collect them. What’s neat is that each bead represents a treatment milestone. I even got a bead to mark my relapse. I’ll be able to show my family and friends all that I’ve been through—some good memories and some not so good.”
Lindsey says her toddler likes to help string the beads, examining each one before handing it to her.
“When the times get really tough, stringing beads is a good way to get our minds off the bad things that are happening,” she says.
In the past year, she has collected 307 beads for Tyler, signifying operations and proce-dures; chemotherapy treatments and hair loss, bad days and good days, needle sticks, inpatient admissions, platelet transfusions and many other events. Lindsey plans to hang the long strings of beads in her son’s bedroom as a symbol of his treatment and a celebration of his bravery.
“I show them to Tyler when he’s having a bad day,” Lindsey says, with a catch in her throat. “I’ll say, ‘You’ve got to keep fighting! Look how much you’ve already done. Look how strong you are!’
“I not only do this for Tyler, but also for me,” she admits. “The beads have sentimental value. Someday, I’ll tell him, ‘You were so strong and you fought so hard, and this is everything you went through.’”
Reprinted from Promise Summer 2010
