How do you measure courage?
For Trinity “Fred” Smeltzer, the answer is, “One bead at a time.”
Take a look at the long, long, (long!) strand of beads coiled in circles around her and you will get a hint of this 9-year-old girl’s courage.
Each bead represents one step in a nearly five-year journey with a rare blood disorder.
A poke. A scan. A biopsy. A visit to the clinic.
And the biggie―a bone marrow transplant.
This collection of more than 500 Bravery Beads, strung together in a chain that can stretch all the way around her bedroom, forms a powerful, poignant testament to what she has endured and overcome.
And those colors! Red kisses, pink stars, blue fishes, yellow smiley faces―this bead collection exudes fun. And that represents something, too―the joy Fred found even as she walked a tough path.
“The craziest thing is she always had a smile on her face,” says her mother, Ryan Richards. “No matter how bad things got, she was always so happy.
“She would get a little bit upset being hospitalized, but she always made the best of it. She was a real trouper.”
Young and brave
Fred―her nickname since birth―spreads out the chain of Bravery Beads in the living room of her grandparents’ home in Boyne City, Michigan. They pool around her on the floor, a playful collection of colors and images.
She points to a string of beads with pictures of bumblebees and explains they represent shots.
“I do not like shots,” she says. “But I got used to them.”
She has undergone all these treatments for a disorder of the bone marrow, called refractory cytopenia of childhood. But it took a while even to get to that diagnosis.
The medical journey began in 2012, just before Fred’s fifth birthday.
In preparation for a tonsillectomy, she underwent blood tests. Her hemoglobin and platelets were so low, the doctor suspected leukemia and referred her to Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids.
After a bone marrow biopsy, her doctors believed she had aplastic anemia, an autoimmune disorder that attacks the stem cells in the bone marrow.
Over the next couple of years, Fred received blood transfusions and different medications.
She would improve for a while, but when treatments stopped, her blood counts would drop again.
Ulrich Duffner, MD, a pediatric blood and marrow transplant specialist, investigated further, consulting colleagues in Germany who specialize in childhood myelodysplastic syndrome. They determined Fred had the first stage of that condition―called refractory cytopenia of childhood.
Her doctors determined a bone marrow transplant offered the best hope for a cure.
That meant many more treatments. And many more Bravery Beads.
In October 2015, Fred underwent chemotherapy to wipe out her own bone marrow and then received fresh marrow from a donor. She added a large blue heart to her bead collection—representing her bone marrow transplant.
A year and a half after transplant, Fred is doing well, Dr. Duffner says.
At home, she displays seemingly endless energy as she plays with her 4-year-old sister, Tinley. They pet her bunny rabbits. They turn somersaults on the bed and tickle each other.
Fred loves to go horseback riding with her family. She hunts with her Papa. And she cares for the menagerie of animals she keeps at her Nana’s house―rabbits, ferrets, cats and dogs.
“She hasn’t had a transfusion since November 2015,” Richards says.
After living with restrictions on activity for nearly five years, Fred can finally enjoy the day-to-day activities of childhood.
“She deserves it,” Richards says. “She’s excited about it.”
And the beads remind her of what she has accomplished.
“She looks at them like, ‘Wow, I’ve been through all of this,’” Richards says. “She likes to take them to school to show everybody, ‘This is what I’ve been through.’”
“Obviously, she’s very brave,” says Rhys VanDemark, a child life specialist with Helen DeVos Children’s Hospital. “She’s a really good example of one of our kids who has used that program to mark milestones.”
The child life specialists began providing beads to patients about a decade ago, he says. They chose the company Bravery Beads as the supplier because its program encompasses kids with a wide range of conditions.
The Pediatric Oncology Resource Team, a group of families serving the families of children with cancer, bought the Bravery Beads start-up kit. Now the cost of the program is covered by P.O.R.T. and jewelry sold in the gift shop at Helen DeVos Children’s Hospital.
Generally, the beads go to kids dealing with long-term challenges. That includes trauma, surgery, cancer, heart disease, kidney disease and cystic fibrosis.
The team modified the program to meet the patients’ needs. Kids get soccer balls for rehab visits, an airplane for an Aero Med flight and tiny computers for sessions with a teacher. When they undergo radiation treatments, they get a glow-in-the-dark bead.
Some beads are designed for the tiniest patients—the babies in the neonatal intensive care unit.
In the NICU, “they work in a couple of different ways,” says child life specialist Katrena Froh. “They work for the parents―kind of recognizing the baby’s milestones.”
“Also, (they work) as a way to show the babies later on what they’ve gone through.”
On the day the baby leaves the NICU for home, the parents stop in to pick up the skate board bead, “because they’re skating out of here,” Froh says.
In addition to honoring milestones, the beads provide hope. When children first start to collect them, VanDemark likes to hold up a daisy bead and say, “This is the most coveted one.” That’s the bead they will receive when they finish their last treatment.
Many patients treasure their bead collection long after they complete therapy.
Annika Ohman included her string of Bravery Beads in one of her high school senior portraits. A 19-year-old from Hudsonville, Michigan, Annika collected close to 300 beads while undergoing 2 1/2 years of treatment for acute lymphoblastic leukemia.
“After I completed it, it was like closure,” she says. “You can see it all there.”
The beads also help her discuss her treatments with friends and cousins.
“It’s almost easier for them to understand my whole journey, rather than just explaining it to them,” she says.
As she looks at the beads with her daughter Fred, Richardson talks about gratitude―for her daughter’s good health and for the donor who provided the bone marrow for the transplant. She and the donor recently exchanged names and emails through the Be the Match registry.
“There’s nothing I could ever say to him that could ever explain―or thank him enough for what he’s done,” she says. “It’s a very unselfish gift. If it wasn’t for him, I wouldn’t have Fred right now.”
Fred leaves the room and returns wearing a fancy green and lace dress that she plans to wear to an upcoming daddy-daughter dance. She twirls, a big smile on her face.
She comes back a few minutes later wearing a shirt with a message that sums up her attitude: “Fearless. Strong. Brave. Bold.”
“Fred’s been very blessed,” says her Nana, Debra Hall. “I tell her, ‘Somebody was looking out for you. If you can ever do anything for anyone, always make sure you do it.’”