When Lukas Larsson began feeling unusually fatigued playing soccer, his parents first attributed it to the rapid-fire changes that accompany adolescence.
“He was a little pale, but he was growing a lot,” said his father, Anders Larsson.
But when the Rock Canyon High School junior struggled to walk up a hill during a family vacation, alarm bells sounded. Doctors found Lukas had an unusually low hemoglobin count; hemoglobin is a protein in red blood cells that carries oxygen. After extensive testing, Children’s Hospital doctors diagnosed Lukas with pediatric myelofibrosis.
The condition, which causes fibrosis in the bone marrow, is rare. The only cure is a bone marrow transplant.
“He’s one of 50 children ever documented in the world with this disease,” mom Dena Larsson said. “You’re just thankful it’s not leukemia. It’s not cancer.”
“I was surprised,” Lukas said, “but I wasn’t upset because they didn’t tell us much at the time.”
The Castle Pines family, assured that a bone marrow transplant would cure Lukas, needed only to find a donor match. That hasn’t been easy. Among 12 million people included in a bone marrow donor registry, no one was a match for Lukas.
Lukas, one of four boys, is also a twin. His brother Oliver is a perfect match. But if the disease is genetic in origin — as it is in some patients — doctors say using Oliver as the donor puts Lukas at risk of re-developing the disease later in life. The Larssons believe Lukas acquired the disease four years ago after a bad bout with seasonal flu, and that it is not genetic. They also believe that if it is not Oliver, they eventually will find a match.
“We are not one bit worried Lukas won’t be well,” Dena said.
Lukas looks forward to the day he can again play soccer and ski — activities that now exhaust him. Like his parents, he’s confident he’ll be well again soon.
“You look at the positive side of things,” he said.
The Larssons no longer are searching just for Lukas. Because there are 12,000 people also searching for matches, their search also could help some of them.
Testing for potential donors is as easy as swabbing the inside of the cheek with a Q-Tip, the Larssons say.
Donation requires extensive recovery for the recipient, but is minimally traumatic for the donor. Bone marrow is extracted from the donor's pelvic bones under anesthesia, and marrow and blood cell counts typically are fully restored in less than two weeks.
The Larssons never could have predicted their current mission.
“It gives you a new purpose — to volunteer and help people,” Anders said. “You appreciate life more.”
“Everything is normal until it’s not normal,” Dena Larsson said. “Then, when it happens to you, you just want to help other people. It would be really nice to quit working and just do this. But we do as much as we can.”
They have overseen several bone marrow donor registry drives, with more planned. When friends and neighbors came to a recent drive, Dena nearly was overwhelmed.
“It was such a love fest,” she said. “It was a celebration. Somebody’s life was saved that day.”
Bone marrow donor registry drives
Nov. 19, 5 to 8 p.m.
Li’l Ricci’s Pizza
16526 Keystone Blvd., Parker
Dec. 7, 10 a.m. to 1 p.m.
3692 Meadows Blvd., Castle Rock
For more information, visit the Marrow Donor Program link at www.bonfils.org