If you're not on the marrow-donor registry yet, read this story ...
Posted on Sat, Jun. 16, 2007
Donation beats rare leukemia's odds
A 9-year-old Overland Park boy gets a life-saving gift from an Alabama man.
By ALAN BAVLEY
The Kansas City Star
Consider these odds: Two years ago, 9-year-old Weston Funk of Overland Park was diagnosed with a deadly form of leukemia affecting fewer than one child in a million.
To save his life, Weston needed a stem-cell transplant. Doctors found him a donor, Keith Bozeman of Winfield, Ala., who was a one-in-a-million perfect match.
On Friday, these two rare individuals met at Children’s Mercy Hospital, where Weston received his transplant. It was a time for handshakes, tears and gratitude.
“Thank you for doing all you did. You saved my life,” the freckle-faced boy said to the man who towered over him.
“You’re very welcome,” Bozeman said. “You’re worth it.”
Bozeman, 35, and his family left their home Thursday for the 10-hour drive to Kansas City. Friends at the 3M plant where he works pitched in $400 for gas. Grace United Methodist Church in Olathe covered the family’s other expenses.
“A small good desire can save someone’s life,” said Jignesh Dalal, Weston’s transplant physician. “This particular gentleman, he just did a little thing out of a good heart, and look what happened. He gives someone a lifespan of 70 years.”
Weston’s illness seemed to come on suddenly.
He was playing baseball early one Saturday and became so tired that he benched himself and fell asleep. His mother, Regina Funk, took Weston to the doctor right away. Maybe he had mononucleosis, she thought. Maybe it was Lyme disease.
The next day, the doctor called with sobering news: Weston’s white blood cell count was abnormally high.
“I asked what did that mean, and he said in all likelihood it meant he had leukemia.”
Within hours, Weston was in intensive care.
Doctors faced a challenge diagnosing and treating Weston’s leukemia.
“One, it is rare, so physicians may not have been exposed to this kind of case before,” Dalal said. He had encountered the illness only once before, while still in training. Doctors generally identify leukemia cells by looking for chemical markers.
“Unfortunately, this leukemia doesn’t have confirmatory markers,” Dalal said. “Even if you suspect it, how do you confirm it?”
But Weston’s blood had an unusually large number of white cells called monocytes. And he was pale. His spleen was enlarged. These were textbook signs of juvenile myelomonocytic leukemia.
For most common forms of leukemia, chemotherapy alone may kill enough leukemia cells to keep the disease at bay.
That wasn’t the case with Weston’s illness.
“We can’t get the leukemia cells down to that low level no matter how much chemotherapy we do,” Dalal said.
Stem-cell transplants let patients take massive chemo doses, many times the amount they usually can tolerate. The doses are so high that they destroy the patient’s bone marrow along with the cancer. Providing the blood-forming stem cells after chemotherapy replenishes the bone marrow and gives patients new blood and immune systems. Dalal calibrated Weston’s drug therapy so his new immune system attacked the leukemia cells lurking in organs that chemo could not reach. Getting the doses right is more art than science.
“I’ll be very honest with you. It just happened right,” Dalal said. “That’s why with every transplant I do my prayers.”
After Weston’s diagnosis was confirmed, the search began for a donor. His best shot was someone in his immediate family. But his parents and brother, Will, were not a match.
Doctors turned to the National Marrow Donor Program. It has more than 6 million volunteers on file, but even so, about 20 percent of patients do not find a potential match in their preliminary search.
Weston was lucky.
Around the time Weston was born, Bozeman had put his name on the donor list. He had forgotten all about it. Then in September 2005, he got a phone call from the donor program. He was a possible match for an 8-year-old boy with leukemia. Tests showed Bozeman matched Weston on all 10 genetic markers that doctors use.
“It’s just amazing to me; his own family didn’t match. But a complete stranger was 10 on 10.”
Bozeman traveled to Barnes-Jewish Hospital in St. Louis to make his donation. For about four hours, he sat in a reclining chair as his blood circulated through a machine that filtered out his stem cells.
Then he waited anxiously for word.
“I was worried,” he said. “ … It would have been a big letdown if anything bad did happen.”
Months later, the donor program forwarded a letter from the Funks with no identifying information that told him the boy was doing well. At the end of last year, the program asked him whether he wanted to exchange information. Bozeman jumped at the chance.
For Weston, treatment was an ordeal. He was in and out of the hospital. He missed school; he missed his friends. Multiple rounds of chemotherapy burned out the lining of his digestive tract. He lost his copper-colored hair.
“It’s scary that something is happening to your body. But they tried to make it not so scary,” he said. “I was always doing something, but it just didn’t feel right. ”
As Weston logs more and more healthy days, the odds that his leukemia will return grow smaller, Dalal said.
“Right now, I think he’s doing whatever he wants to do as a normal child,” he said.
Weston already has plans of his own for this summer: “I love roller coasters.”