For 12 months, Donnie Gerault and his family were trying to figure out what was going on with son Parker. Then, in December 2017, the now-9-year-old had a diagnosis: brain cancer on his brain stem.
Parker went through surgery and chemotherapy. He spent 75 days at Dell Children’s Medical Center of Central Texas at first and sometimes needs to return. Each step of the way, for every IV put in, every time he was put on a feeding tube, had a surgery or was scanned, Parker has received a bead to mark that moment.
"It’s for everything you can imagine that you never want to go through as a patient," Gerault says of Parker’s beads.
Each bead is a color or shape that represents a treatment. A star shape for surgery, one that looks like a spine for a lumbar puncture, a heart for being in the intensive care unit, a dog bone for a visit from a therapy dog, a fish for when you swim upstream and power through something that is hard, a purple heart for finishing chemo.
After almost three years, Parker has 3,000 beads. "This is your story," Gerault tells his son.
The beads are part of Beads of Courage, a national program that began in Arizona in 2003 at Phoenix Children’s Hospital by nurse Jean Gribbon.
The program was brought to Dell Children’s in 2007 as part of the oncology program, but this month, Dell Children’s expanded it to children who are part of its cardiac program, have chronic conditions that require frequent hospitalization or are in the neonatal intensive care unit.
They are able to do so through a $20,000 donation to the Dell Children’s Foundation in Parker’s honor. Each year, they will need an additional $10,000 to fund the program.
Rachel Carnahan-Metzger, a palliative care social worker who leads the expansion of the program, works with kids who are medically complex.
"I started to have this sense that they were missing out in this wonderful intervention that had been so successful," Carnahan-Metzger says.
Already, 65 staff members have been trained as ambassadors to be able to identify who might benefit from the program, as well as the right way to use it. Those staff members now wear a small pin of beads by their name tag to encourage conversation about Beads of Courage.
There won’t be strict criteria as to who gets enrolled, but the ambassadors looking for kids who are often hospitalized or are in for an extended hospitalization.
Carnahan-Metzger isn’t sure how many kids will be enrolled each year, but it could be as many as 100 this first year.
Beads won’t be used as bribery to get a treatment done, but more of a recognition of the hard work that the kids are doing.
"The heart of the Beads of Courage program is really offering this tangible outward sign of the journey that kids have gone through," Carnahan-Metzger says. "It's a form of narrative medicine. A big part of our world is telling the things that happen to us."
Beads of Courage also has a Share a Bead program. A person wears two special handmade beads hooked together by a safety pin. Someone can carry the beads through an experience like running a triathlon in a child’s honor. The child is then given one of the beads with a piece of paper that tells something about where that bead has been.
"It’s something that’s super meaningful," Carnahan-Metzger says.
For parents, Beads of Courage helps "create meaning out of these situations," Carnahan-Metzger says. "Having a child in the NICU, having a child with a medical complexity, is so exhausting and draining. ... It feels good to have other tools in our toolbox to honor all the challenges our family goes through."
Kids wear them as a necklace or a bracelet or put them in a special wooden box donated by a local woodworker.
Parker’s beads are in long strands that sit in a jar in his family’s living room.
"Parker’s are so heavy, they couldn’t be a necklace," Gerault says.
Parker still has 10% of the tumor left that cannot be operated on because of its location. He was paralyzed on his right side and was using a wheelchair at first or being carried.
His voice is now a whisper; he eats through a feeding tube and is put on a ventilator at night because the tumor affected that part of the brain that reminds you to breathe when you are asleep.
That might seem dire, but "Parker’s one of the lucky ones," Gerault says. "He gets to tell his story and show his journey."
He can walk and run. He can swim. He no longer has a tracheostomy.
The beads "remind us how far he’s come," Gerault says.
For Parker, the beads help to tell the story of those first 75 days, part of which he doesn’t remember; in fact, he calls that time "the black hole."
At first, Parker didn’t really want the beads because they were a reminder of what he was going through, but now that he is on the other side, he’s proud of them. His story has helped other kids wear their beads with pride.
"There’s a camaraderie of these children that you can't even describe," Gerault says, but they show each other with their beads.
For some families, the beads are a reminder of the child they lost and the journey they went through as a family.
"We have seen beads of courage be almost more valuable to bereaved families," Carnahan-Metzger says. "Bereaved parents live with this fear of forgetting or fear of their child's life being forgotten. It becomes this really beautiful way to memorialize their child and to have a touchstone to remember all these memorable pieces."