Boy's cancer fight highlights need for biracial donors

The American Red Cross and organ transplant groups have sought to increase blood, tissue and organ donations among blacks nationwide for years

By Pam Adams

Copley News Service

December 16, 2004

Nikki Allen had hoped things would work out differently.

Her son, Zach, had been back and forth between their Pekin, Ill., home and St. Jude's Children's Research Hospital in Memphis, Tenn., waiting for a transplant of her bone marrow. For now, he's home, with plans for a bone marrow transplant replaced by plans for more experimental drug therapy.

But hopes and plans change day by day. If things had gone according to Allen's earlier wishes, they would have found someone willing to donate bone marrow for Zach's transplant, someone whose bone marrow matched Zach's perfectly. Failing to find a matching donor, Allen hoped a transplant using her bone marrow would work.

"The scariest thing is they're going to use mine," she said at one point, "but the chances of his body rejecting my marrow are a lot higher."

As it is, a transplant is no longer an option, even if they had found a matching donor. Still, Zach's story highlights the complicated science of race and transplantation.

Nikki is white, her son is biracial. His father is black. If no one in the family is a matching donor, the chances of finding a good match improve when the pool of donors is from the same racial or ethnic group.

The American Red Cross and organ transplant groups have sought to increase blood, tissue and organ donations among blacks nationwide for years, with mixed success. But Nikki and Zach Allen's situation highlighted the need for a targeted focus on a narrower group -- biracial donors.

The multiracial, multiethnic backgrounds of golfer Tiger Woods, actress Halle Berry and U.S. Sen. Barack Obama, D.-Ill., have helped spotlight the growing number of Americans of mixed-race heritage. Before the 2000 Census count, advocacy groups actively lobbied the Census Bureau to redefine racial categories to reflect the country's biethnic and multiethnic population.

But increased recognition has not translated into increased understanding of specific health issues faced by mixed-race and multiethnic children with cancer, leukemia or other diseases, according to the Mavin Foundation. The Seattle-based organization centers its donor recruitment and education efforts on people of multiracial and multiethnic heritage.

While blacks make up less than 10 percent of the donors on the National Marrow Donor Program Registry, the numbers of mixed-race donors are far less than that, about 2 percent, says Pam Eigsti, supervisor of marrow donor services at the American Red Cross.

"It's not impossible to find matches outside of a person's race," she says. "I know of situations where the NMDP has found donors who aren't the same race. But it's easier to find them among the same racial categories."

There also is a crucial need for more donors who are Latino, American Indian, Alaskan native, native Hawaiian or Pacific Islander, according to the NMDP.

Zach, 12, was diagnosed with neuroblastoma, a cancer of the nervous system, in 1997. Except for three years -- from September 2000 to March of this year, when the cancer was in remission -- much of his life since 1997 has been a series of chemotherapy, radiation treatments, experimental therapies and hospital stays.

Doctors performed a bone marrow transplant using his own marrow in 1999.

"There were a lot of complications," Allen says. He ran a 106-degree fever for days and the drug he had to take is so potent it's nicknamed the "shake-and-bake" drug.

"It was the worst thing I ever watched him go through, and I couldn't do anything but be there, physically," she says.

Though doctors followed up with radiation treatments and gene therapy, Allen wasn't sure what to expect until August of 2000 when Zach, then only 8, told her he no longer needed to take the strong painkillers that had been prescribed.

"He said God told him he wasn't going to die," Allen says. "And I knew something was different because he started playing, riding his scooter."

Allen, 31, a single mother with one other child, Kylee, 7, decided to celebrate life every day. She planned special trips and special parties for special events and, sometimes, for no reason at all. But she also "treasured normal life," as she put it in her online diary.

"I was always so proud of Zach," she says. "He's constantly making everyone else smile."

His back started to hurt on and off in November of 2003. By March, Zach, a student at the nearby Good Shepherd Lutheran School, was on painkillers all the time. And by August, Allen was desperately trying to recruit biracial donors, organizing a bone marrow drive at a Baptist church in conjunction with a blood drive the church was sponsoring for black donors.

The bone marrow portion of the drive was disappointing, Allen says.

"We didn't get as many donors as we had hoped," Eigsti says, adding she isn't able to recruit bone marrow donors at every blood drive because they're short staffed.

"I'm a one-man department right now," she says.

Zach's time ran out before his mother could coordinate plans to organize another bone marrow drive. New, chemo-resistant cancer tumors had already returned, and the stress of previous chemotherapy and radiation treatments had already worn down his spinal cord, where the cancerous tumors had first taken hold.

He's scheduled for surgery on his spine, a laminectomy, along with the removal of tumors in his chest and spinal areas. But even as Allen waits for the next phase of her son's treatment, she realizes the need for biracial and multi-ethnic bone marrow donors more intimately than most.

"A larger generation of biracial children is growing up," she says. "Zachary would not be the only child who benefits."

Copyright © 2004 Copley Press Inc.

This article posted December 31, 2004.