BELLEVUE — Devon Peterson was having the time of her life, driving a team of Clydesdales through the Sawtooth Mountains with a wagon full of campers at Camp Little Laugh when the migraines began.
The 13-year-old Bellevue girl thought that she’d been given a new lease on life after spending months at St. Luke’s Children Hospital in Boise being treated for acute myeloid leukemia, following a diagnosis in January 2016. But now, mere months after being declared in remission, a CT scan showed a mass on her brain.
The cancer was back, along with crippling pain she felt even while zonked on medicine.
“The cancer cells seemed to have lain in wait in her spine and are in her nervous system,” said her mother Jennifer “Jen” Peterson. “The first round was more chemo-related illness, accompanied by weight loss and weakness. This is more straight-up pain.”
Now, the Wood River Middle School student is back for a second round of treatment in Boise where she is receiving a high dosage of chemo to keep her alive. Doctors believe her best chance for recovery lies in a bone marrow transplant.
Jen and her husband, Tyler Peterson, who organized the Wood River ski-joring competition before his daughter’s illness, had hoped Devon’s twin sister, Gracie, would be a match since she had some of the same genetic makeup. But there’s only a 1-in-4 chance that family members are matches, and it didn’t pan out.
“No one who knows them would be surprised to know that they are mirror opposites. Gracie is more Dad. Devo, more Mom,” said Jen Peterson. “But, right when we felt like the quicksand was cutting off our breath, the ropes and nets appeared and we were back on solid ground.”
Peterson was talking about the kindness of friends and even strangers who are showing up in the Wood River Valley and the Magic Valley to take part in swab parties for Devo, who turned 14 this month.
Sarah Hedrick volunteered her Hailey bookstore, Iconoclast Books, for a two-day swab party. She had been cheered by the way the community supported her and her family following her husband’s death in an car crash several years ago.
DiVine Wine Bar next door volunteered to give swabbers 15 percent off a beverage. And 258 people answered the call to take a moment to do a cheek swab that would put them on the international registry.
“That’s a lot of people for the size of the community,” said Koren Karlovic, donor recruitment coordinator for DKMS in the Pacific Northwest.
The effort has continued, with Ketchum firefighters swabbing cheeks at the fire station for the remainder of September. Camp Rainbow Gold is holding two events in Boise in the girl’s honor.
And there’ll be a swab party Saturday in Twin Falls in conjunction with an automotive sales event at the Magic Valley Mall.
The swabbing is easy, said Karlovic. Anyone in good health between the ages of 18 and 55 can do it, as all it involves is swabbing the inside of the cheek with what looks like a giant Q-tip for 30 seconds. The person’s Human Leukocyte Antigens tissue markers will be reported to the data base, where it will remain until the person turns 61.
But finding a match is not so easy.
Acute myeloid leukemia is basically bone marrow failure in which stem cells get out of whack and fail to produce the healthy red blood cells one needs to live.
DKMS, a nonprofit international organization, was founded in 1991 in Germany with the idea that the more people tested the more opportunity there is to find matches to saves lives But, while there are 7.6 million people in the DKMS registry, there are 14,000 people worldwide looking for a match.
That’s because there’s only a 4 percent chance of finding a match with a perfect stranger.
“It’s a needle in the haystack. Our goal is to get as many needles in the haystack — young, healthy willing donors — as we can," Karlovic said. "The fact that it’s so hard to get a match just goes to show how unique and wondrous our DNA really is."
The biggest challenge is educating people about how easy it is to save someone’s life in light of all the misconceptions and horror stories about what donors go through, said Karlovic.
Being a donor is easy and painless, she added.
Someone found to be a match undergoes a physical exam and blood test paid for by DKMS. About 77 percent of those can make a stem cell donation.
“It’s similar to a blood donation in that you sit with a needle in your arm for a few hours, all the while providing life saving medicine,” said Karlovic.
The rest must provide direct bone marrow donations. But those, too, are outpatient procedures in which doctors simply extract marrow from the hip bone with a needle.
“It’s not a spinal tap, regardless of what people have seen in horror movies,” said Karlovic. “You sleep through it.”
Devon Peterson wants those who participate in swab tests know that they are brave and heroic and that she will not waste a minute of a life-saving transplant, said Jen Peterson.
“Apparently, young males are the best match,” her mother quipped, “so if any young males are out there reading ... .”
Editor's note: This story was updated on Sept. 25, 2017, to correct a misattributed quote.