June 17, 2009 — There's really only one thing Aloy "Wenty" Nielsen wants for Father's Day: a matching bone-marrow donor for his daughter, Khephra.
And he's hoping that that wish will be answered, perhaps as early as June 26-27, when a drive will be held at St. Croix's Pearl B. Larsen School to get people to register for the National Marrow Donor Program.
Khephra Nielsen was born 30 years ago on St. Croix and went stateside for college, earning a bachelor's degree in architecture from Temple University in 2002. She came back to the island in 2006, working for a local architectural firm before accepting a position at the University of the Virgin Islands.
Then, three months ago, she was diagnosed with acute myeloid leukemia, a particularly aggressive form of the disease. Khephra and her mother, Vivian, were off to New York, where she has undergone two rounds of chemotherapy at the Sloan-Kettering Cancer Center, one of the world's premiere hospitals specializing in cancer treatment.
Khephra's leukemia is now in remission, but she needs a bone-marrow transplant.
At a press conference Wednesday on UVI's St. Croix campus, Lillian Sutherland of the V.I. Minority Oregon Tissue Education Program joined Aloy Nielsen; Tita Encarnacion, a nurse and cousin of Khephra; cousin Peter Nielsen; and Emily Graci, a friend of Khephra, to announce the registration drive. Khephra, Vivian and Khephra's brother, Kimani, were also part of the press conference by phone from New York.
"It's rare that you have a family this involved to bring about the results they're seeking," Sutherland said. "And it's for the benefit of everyone. They're not just doing this for Khephra."
So far Vivian, Kimani and Peter Nielsen have all been tested and found not to be matches. Aloy is waiting for the results of his test. And the national registry of potential bone-marrow donors has yet to find a match.
The body's bone marrow, the milky-white substance in the center of bones, produces the white and red blood cells and platelets needed for life. Leukemia is a type of cancer that affects the marrow, making it unable to produce those cells needed to fight off infection and carry nourishment throughout the body. Chemotherapy destroys the bad cells, but it also destroys any good marrow cells. The body will create new marrow to replace the old, but there's a chance that the new marrow will also have leukemia. By transplanting fresh, healthy marrow from a donor who is a genetic match, the chances of survival are significantly increased.
There's probably a donor out there who's a match for Khephra, but that person isn't registered with the national marrow-donor database.
According to Sutherland, minorities — particularly African-Americans and Hispanics — are significantly underrepresented in the marrow-donor database. She estimated that 80 percent of the people in the registry are white.
At the same time, she pointed out, race is not a major factor in whether a person is a match. Sutherland remembered a recent case on St. Croix where a person received a kidney donated by someone from Hawaii.
When a person is found to be a match, he or she is not forced to donate, Sutherland said, and all costs of bone-marrow donations are typically paid for by the insurance of the patient who is to receive it, including the transportation of the donor to the site.
Marrow donation is not a surgical procedure, and is performed under anesthesia. Healthy marrow is withdrawn through a needle inserted into a donor's bone. For a few days afterwards there will be some soreness.
The donor-registration drive will be held Friday and Saturday, June 26 and 27, at the Pearl B. Larsen Elementary School. According to Sutherland, people who arrive will first fill out paperwork. Then, after a pre-screening counseling, an oral swab will be taken, as simple as running a cotton swab on the inside of a person's mouth. Then there will be an explanation of what happens if a potential donor does match someone in need of a transplant.
Registering is free to minorities, Sutherland said. Caucasians are asked to pay a $53 fee. She added that she disagrees with the policy, but it is the policy.
Those interested can also begin the registering process online at marrow.org, the website of Be the Match, the organization that maintains the database. After completing the registration process, the potential donor will receive a swab kit in the mail, which they can then send back to complete the process. The site also answers many of the questions about becoming a donor.
For the Nielsens, it's not an academic question — it's the life or death of a loved one.
Peter Nielsen said he was happy to be tested and become part of the registry, even though he was not a match for his cousin.
"Everyone is someone's cousin," he said, "or mother or brother or daughter or friend."
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