When Claire Joyce overcame acute myeloid leukemia at the end of 2002, the Burnaby elementary-school principal figured she had fought the good fight. So when the blood cancer came back just over a year later, Joyce was devastated and enraged. Doctors gave her two months to live. The only thing that would save her was a bone-marrow transplant. Without a sibling as a possible match, Joyce had to rely on an unrelated donor.
She got lucky. A donor from outside the country suddenly appeared on Canada’s unrelated-bone-marrow-donor registry, which is operated by Canadian Blood Services and locates matches nationally and internationally. Even with millions of potential donors listed on registries all over the world, some patients never find a match.
On July 4, 2004, Joyce had her transplant. The 55-year-old married mother of one today credits a stranger for giving her another chance to live.
“Somebody was so charitable as to give the greatest gift of life,” Joyce says in an interview at the Georgia Straight’s office. “I don’t think a bone-marrow donor can even begin to understand their gift, how many lives they touch by giving to just one person.
“Seeing the love in your husband’s eyes, seeing the marriage of your only child: I’ve had all that because someone gave me the opportunity to continue with my life.”
Joyce realizes that part of the reason she was fortunate enough to find a match is that she’s Caucasian. Of the approximately 222,000 people on Canada’s registry, 85 percent are white. An unrelated match is most likely to be found in a donor of the same ethnic background as the patient.
Beverly Campbell, the registry’s director, says the lack of nonwhite and mixed-race donors is one of the organization’s most pressing challenges.
“We can’t do this without donors,” Campbell says on the line from her Ottawa office. “Canadians can come back to a healthy, productive life thanks to this kind of generosity.”
Although siblings can sometimes donate, the chance of them being a match is only 30 percent.
Bone marrow, which is found inside the body’s large bones, is a spongelike substance made up of hematopoietic stem cells. These stem cells develop into white and red blood cells and platelets, which, respectively, fight infection, carry oxygen and waste throughout the body, and help control bleeding.
To donate bone marrow, you have to be between the ages of 17 and 50. Matches ?are determined according to the compatibility of inherited genetic markers called human leukocyte antigens. (More details on donation can be found at www.blood.ca/.)
Once a donor is recognized as a match, she undergoes a physical exam and infectious-disease testing and is asked to sign an “intent to donate” form. The document isn’t legally binding (potential donors always have the option of changing their minds), but once it’s signed, the recipient is notified and her transplant preparation begins. If the donor backs out once that process has started, the patient will most likely die because there won’t be enough time to find another donor.
No identifying information is provided to the donor or the recipient during the process. Confidentiality clauses stay in place for varying amounts of time, depending on the country.
A donor goes in as a day patient and is advised to take it easy for at least three days afterward; she may feel pain at the puncture sites on the hip bones. The bone marrow that is removed is replaced by the body within two to three weeks.
The benefits of donating bone marrow, however, far outweigh the risks, says Victoria resident Dave Charlebois. The 45-year-old investment adviser and married father of one is a long-time blood donor who has so far given blood 107 times. (His lifetime goal is 250.) He learned about bone-marrow donation in the early ’90s and didn’t hesitate to sign up.
In February 2002, he got a call saying he had been identified as a match. He donated on June 12 of that year, and the recipient received his bone marrow on June 13—which happens to be Charlebois’s birthday.
A confidentiality clause was in place for two years between Charlebois and his recipient, but during that time he received an anonymous card from a woman thanking him for saving her daughter’s life. He learned that his match was a one-year-old.
His recipient, Sarah Byrne of Guelph, Ontario, suffers from a rare genetic disorder called Hurler syndrome. He met the girl, who just turned five, this past summer.
“I will stop to tell anyone my story,” Charle-bois says. “The whole point is to get people to say, ”˜You know what? I’m going to go put my name on the registry.’”¦You’re giving someone a chance they might not otherwise have.”
Charlebois describes the donation procedure itself as “a little uncomfortable”. “But what’s a little bit of pain? Look at what that family has gone through. I’ll go through it again.
“We have a healthy son,” he adds. “She’s the daughter we never had.”