Valley skateboarder's transplant an act of willpower, luck of the draw - East Valley Tribune: Health

Valley skateboarder's transplant an act of willpower, luck of the draw

Patient heritage a significant factor when finding a match; differences exist between cord-blood and bone marrow transplants

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Posted: Tuesday, July 23, 2013 6:39 am | Updated: 12:55 pm, Mon Aug 5, 2013.

A bone marrow stem cell transplant isn’t necessarily as expensive as staying in intensive care for months and going through chemotherapy and testing that could make medical bills seem insurmountable. Yet it’s finding a match for a bone marrow donor that can make the former an even tougher climb.

“The cost isn’t what keeps it from being widely available,” said Dr. David T. Harris, a professor in the University of Arizona’s department of immunobiology. “It’s the lack of stem cell donors to be able to match the patient that needs the transplant; that really limits its availability.”

Both bone marrow and cord-blood stem cell transplants are effective at prolonging life, and a person with leukemia would likely die without transplantation of either type, said Harris, a researcher of immunotherapy and immune intervention.

When a transplant is administered after chemotherapy, sometimes as a last resort, he said, patients will stay in intensive care from a few weeks to months.

Sebastian James, an 18-year-old skateboarding fanatic from Phoenix, was diagnosed with acute lymphoblastic leukemia in 2011. Since, he has seen much help and support from his family and the skateboard community after his bone marrow stem cell transplant.

Trent Martin, co-owner of Cowtown Skateboards suggested that Chantel Hutchison, James’s aunt, use an account at Fundly.com to help raise awareness and money for “Sebby’s Heroic Battle.” 

The skateboard shop, which was founded in Phoenix in 1996 but has three Valley locations, including one in Tempe, will raffle prizes for people who have donated money to help with James’s medical bills.

“It didn’t really matter how well we knew him,” Martin said. “He was a skateboarder that needed some help and wanted to raise awareness to the cause.”

Hutchison and shop co-owner, Laura Martin, believed James’s support was fading. So, the owners decided that they would hold a weekly raffle that ends August 2. 

As of late this month, the Fundly account had more than $3,200, with an eventual goal of $20,000 by mid-September.

Martin reminds that there is another way people can help that isn’t monetary.

“The most important thing would be donating bone marrow,” Martin said.

Harris explained that there are limits as to who can be a match. Matching is limited by ethnicity, he noted, adding that it’s best to have a sibling match because it significantly reduces rejection.

Harris said roughly 6.5 million donor stem cells are Caucasian — a group with higher expectancy of having a match. Minority groups have a 10 percent chance out of about 7.5 million total registered donors.

Rob Schemitsch, director of business development at Celebration Stem Cell Centre in Gilbert, said he believes cord-blood stem cells are safer than bone marrow because cells from the umbilical cord haven’t designated itself as cell-specific, and so rejection and graft-versus-host disease is greatly reduced.

The center stores cord-blood from anonymous donors, and also has private banks for the future health of newborns. But right now, the East Valley stem cell bank does not collect bone marrow. It has a national affiliate — Be The Match Registry — that accepts donations, Schemitsch said.

Cord-blood would help minority groups in need of stem cell transplants because of higher birthrates than whites, Harris explained, who founded the first cord-blood bank in the United States in 1992.

“It’s best to have regional banks that could address regional ethnicities,” he said. Potentially tens of millions of dollars would be needed to start a cord-blood bank in a major hospital with around seven million each year thereafter.

Finding a match was a challenge for her nephew, who is part Navajo with Hopi ancestry, Chantel Hutchison said, and also because of the small group of minority donors. A series of protein markers matches a donor’s stem cells to that of a patient’s genetic makeup.

“All it is is a cheek swab to join,” his aunt said of matching donors for a bone marrow transplant.

He had a nine out of 10 from a Be The Match donor with a similar ethnicity. His sister was tested but was not a match. James had received his transplant on May 22, and has been recovering at the Phoenix Children’s Hospital, Hutchison said.

“The more people that are willing to donate, the more likely that everyone will have a potential match, if they ever need it,” Schemitsch said. 

“So we really just need to increase the message and let the community know … especially expectant mothers that they have the options to bank or donate," Schemitsch added, specifically referencing umbilical cord blood extracted after childbirth.

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