Features

Beads for the Brave

How Journey Beads helps kids cope with cancer
nattaly-brown-journey-beads-kids-with-cancer
Nattaly Brown, 5, shows the beads she received for all the procedures she endured during her treatment for cancer at Bronson Children’s Hospital.

The 40 handcrafted glass beads 13-year-old Izze Fahl of Kalamazoo has collected since May are more than just brightly colored, eye-catching trinkets: They are badges of bravery and hope.

Fahl, who recently finished treatment for Hodgkin’s lymphoma, a cancer of the lymphatic system, is one of many pediatric cancer patients at Bronson Children’s Hospital who receive beads for challenges they’ve overcome during their cancer treatment. Called Journey Beads, the beautifully crafted beads made by artists at the West Michigan Glass Art Center embody hope in an otherwise daunting journey.

At the beginning of May, doctors diagnosed Fahl, and seemingly endless tests, procedures and oncology visits ensued for the teen.

“Going into all of this is so overwhelming,” Fahl says. “You think, ‘That’s the end. It’s over.’”

In the midst of this whirlwind, Fahl decided to participate in Bronson Children’s Hospital Journey Beads program. Through the program, pediatric cancer patients collect beads, each one symbolizing a specific procedure or trial endured such as a blood transfusion, surgery, bone marrow transplant or hair loss. The beads serve as a testament of strength and courage and offer a bright spot for patients.

“It was fun to be part of something positive,” says Fahl’s mother, Michael Fahl.

Behind Journey Beads

Bronson Child Life Specialist Corey Richardson is one of the hospital’s clinically trained staff members who introduce pediatric cancer patients to Journey Beads. In her work in Bronson’s inpatient pediatrics and the pediatric intensive-care unit, Richardson’s primary role is to “normalize” the environment for pediatric patients by teaching them about medical procedures using child-friendly language. Richardson also supports patients through those procedures and plans special events for the kids.

“When a child is diagnosed with cancer, they spend the first few days in the hospital,” Richardson says. “We give them just a little time and after a few days, we go in and bring in a nice packet.”

In that packet is a leather string and an initial set of beads signifying the procedures the patient has already been through. “Their first set is usually close to 20 beads,” which means the young patients have undergone 20 procedures in only two days, Richardson explains.

Currently 50 kids are enrolled in Journey Beads, and Richardson says the program has elicited an overwhelmingly positive response from patients and their families. Parents will build strings of beads for their sick infants and toddlers, but children ages 5 and older become extremely engaged, Richardson says.

When bringing in a bag containing a child’s earned beads, “I always pour it out onto their bedside table,” Richardson says. She holds up each one, explaining what it represents, such as the bead with a paw print for “seeing the doggie” — pet therapy — or the fish, which signifies having a central venous catheter, also known as a central line, and/or port taken out. (The central line and port — a device that sits outside the skin and is attached to the central line — are used to administer medications and nutrients and for medical monitoring.)

“It really brightens their day,” Richardson says. “They always have their beads hanging from their IV pole. And you see how much they’ve had done.”

Besides having a therapeutic impact, the beads also help patients articulate their experience. “Often these kids are shy and nervous about what they’ve been through,” Richardson says, but the beads act as a conversation starter. When family and friends visit, they inevitably ask about the beads, and the kids open up, she says.

Matchmakers

The Journey Beads program came about when a Bronson Hospital child life specialist attended a conference and heard about Beads of Courage, a national program that gives beads to pediatric cancer patients. Donna Moyer, a clinical nurse specialist at Bronson, says the hospital latched onto the idea and decided to seek partners within the local arts community.

Moyer called Beth McCann, deputy director for programs and external communications at the Arts Council of Greater Kalamazoo, who immediately knew the perfect resource: the West Michigan Glass Art Center. “I reached out to the executive director at the time, Rebecca Boase, and it turned out beads were already being made here,” McCann says. “I really sort of felt like the matchmaker.”

Once the Journey Beads program was established as a collaboration of the Bronson Health Foundation, the Arts Council of Greater Kalamazoo and the West Michigan Glass Art Center, the committee developing the program set about determining how many beads would be required.

“The nursing staff really put a lot of effort into trying to figure out how many blood draws and how many spinal taps” the children might undergo, McCann says, using those procedures as examples. “They did a lot of internal research.” Now there are 37 procedures for which kids receive beads.

The collaborators also sought grant funding for the program. “The State of Michigan has a project fund that you can apply to, and this fit the niche,” McCann says. Journey Beads received a $3,000 grant from the Michigan Council for Arts and Cultural Affairs. The program proved a match because of its collaborative nature, but McCann believes Moyer’s words in the grant application really made the difference.

“She wrote it truly from the place of ‘this is what it means to the kids,’” McCann says, “not what it meant to the hospital, not what it meant to the nurses, but what this would mean to the kids and their families.”

In addition to the grant, $6,000 in private donations funded the material costs to start Journey Beads. “(The donations) range in the single digits to multiple thousands,” says Terry Morrow, executive director of the Bronson Health Foundation, which acts as the program’s conduit for receiving funds.

From the start, collaborators say they have fully grasped the significance of Journey Beads. But for Moyer, its importance resonated loudly during a recent meeting in which the words of a young girl undergoing treatment were shared. “When she gets married, she wants a bead made for her bridesmaid,” Moyer says.

Volunteers behind the beads

The Journey Beads begin life as colorful glass rods waiting in a cabinet at the West Michigan Glass Art Center until the skillful hands of artists transform them into vibrant, one-of-a-kind beads.

“If you had to pay for this program as an organization, it would be cost-prohibitive if the artists did not donate their time to do this,” McCann says.

Dawn Bennett-Dailey, WMGAC’s vice president, is one of about 50 artists who donate their time to make the beads. Bennett-Dailey is a cancer survivor and understands how a cancer diagnosis can feel like the end of the world.

“I had to go through that and fight that,” she says. “I couldn’t imagine what the kids were going through.”

When Journey Beads was launched in 2013, the artists had to create about 8,000 beads, and the need for making the beads continues. Many volunteers result from Art Hop demonstrations at the WMGAC, where attendees watch the bead-making process and an artist is on hand to speak with the public about the Journey Beads program. Some visitors become inspired and sign up for bead-making classes. Bead makers also come from Bronson Methodist Hospital, which offers its staff scholarships to learn the craft.

“We’ve had nurses enroll in classes after they have worked with the kids and become bead makers,” says Adrienne Marks, WMGAC marketing coordinator. Volunteers help the program in other ways too. Beads contain residue inside when removed from the mandrel, a skinny metal bar about 12 inches long on which the beads are crafted. Individual volunteers, as well as volunteer groups from Stryker Corp. and other organizations, often perform the task of reaming that residue out of the center of the beads and then washing the beads.

Bennett-Dailey sees Journey Beads as the WMGAC’s most important endeavor. Her eyes light up when she speaks of the kids and their families, many of whom have come to meet her, sharing their stories and scars and, of course, showing her their beads.

“I firmly think that making a difference in a child’s life during the most difficult phase in their life is very rewarding,” Bennett-Dailey says. “I have been told that they come out of a procedure or surgery wanting their bead instead of focusing on what just happened to them. It helps them forget about the pain and focus on something else. Nothing at the center has touched people’s lives as much as this program has.”

For the children receiving Journey Beads, it means a great deal that someone in Kalamazoo crafted the beads especially for them. “I think that it’s phenomenal that the artists take time to do this,” says Michael Fahl, who expresses excitement about someday meeting the volunteers.

Artistically gifted, Izze Fahl is making plans for her own beads — perhaps she’ll place them in the Bronson Pediatric Hematology Clinic. “I’m thinking about incorporating them into some sort of art piece to help someone else smile,” she says.

Category: 

CHECK OUT:

Touching people's lives

“I firmly think that making a difference in a child’s life during the most difficult phase in their life is very rewarding. I have been told that they come out of a procedure or surgery wanting their bead instead of focusing on what just happened to them. It helps them forget about the pain and focus on something else. Nothing at the center has touched people’s lives as much as this program has.”

—Dawn Bennett-Dailey, volunteer beadmaker and member of the West Michigan Glass Art Center