One family's search for a bone marrow match has led to potentially life-saving blood-sample drives around Southeast Alaska.
When relatives of Alex Cesar, a 6-year-old Juneau boy with leukemia, realized they needed to be tested as possible donors of bone marrow, they learned there was no inexpensive, easy way to do it.
Andrea Quinto, Alex's aunt, said the testing kits cost up to $300 and there was no one to draw the blood, send it to a lab and record the results with a donor registry.
Family members are the most likely source of matches, and Alex has 50 cousins scattered around the state.
Because Quinto got on the phone to blood banks and learned what to do, drives to collect blood samples are scheduled this month in Juneau and Hoonah, and others are likely throughout Southeast Alaska and elsewhere in the state.
"What we want to do is make it possible for people to be tested on a regular basis," said Jennifer Sellen of Anchorage, a former Blood Bank of Alaska trainer who is volunteering to help in the Southeast drives.
As Quinto called around and as other relatives walked the cancer ward in Seattle's Children's Hospital, where Alex is being treated, they found several other Southeast Alaska youths who may need bone marrow transplants.
"I don't understand," Quinto said. "There are so many children here in Southeast Alaska ... that need a transplant, and we don't have the resources to help them? That's a major problem."
The Blood Bank of Alaska sometimes takes blood samples for bone marrow tests during its regular blood drives, said spokesman Gregg Schomaker. The only sampling it has conducted in Juneau was in October 2004, he said.
Greatly needed are donors who are Alaska Native and other minorities, said John Perry, laboratory director at the Juneau Medical Clinic of the SouthEast Alaska Regional Health Consortium.
"The likelihood of a match is very rare, so the more people on the donor registry, the better," Perry said.
Bone marrow transplants can save the lives of people with leukemia, lymphoma and other blood diseases by providing healthy blood cells.
The drives do not collect bone marrow itself. Rather, donors give small blood samples, which are tested for the genetic markers on their white blood cells.
The test provides evidence of tissue compatibility between donor and recipient. The potential donor's tissue type is added to a national registry.
Alex's father, Robert Cesar, said if six months of intensive chemotherapy isn't effective, the boy could need a bone marrow transplant.
So far, Alex has responded well to the initial treatments and is strong enough to ride his bike around the ward with his grandfather, Kermit Cesar, hustling along with the IV.
"Right now is the best time for him," Cesar said of Alex. "In the later stages of his chemotherapy, his immune system will be down and he'll be tired."
For more about bone marrow donations, see: http://www.marrow.org
Alexander Cesar: http://www.thestatus.com, the patient page, and type in Cesar as the last name and Alex99801 as the password.
Where to donate a blood sample for the Bone Marrow registry:
Today, 8 a.m.-6 p.m. or later, Juneau, Goldbelt Hotel conference room and St. Paul's Catholic Church.
Wednesday, 9 a.m.-3 p.m., Hoonah, Presbyterian Church.
Monday, 8 a.m.-noon; Tuesday, 1-4:30 p.m.; and Wednesday, May 25, 1-4:30 p.m., SEARHC Juneau Medical Clinic. For SEARHC beneficiaries. By appointment only; call 463-4040.
When doctors need to transplant bone marrow, they turn to family members first. But 70 percent of the time that doesn't produce a match, Schomaker said.
Because tissue type is inherited, patients are most likely to match someone of their own race and ethnicity. Only about 1.6 percent of registered donors nationwide are Native Americans, Schomaker said.
"Because Alex is Alaska Native/Filipino, this is the reason it's important to get the Native community to come out and the Filipino community to come out," said Mike Miller, founder of the Juneau-based Cancer Connection, which helps cancer patients and their families.
Grass-roots drives, prompted by Quinto, are being held today in Juneau and Wednesday in Hoonah.
Rachel Boisvert of the Blood Bank of Alaska helped arrange them through the Puget Sound Blood Center in Seattle, which supplied the kits. Medics with Capital City Fire and Rescue will take blood samples in Juneau.
SEARHC will take blood samples next week in Juneau from its beneficiaries by appointment; call 463-4040.
Other drives are being organized in Southeast Alaska, but the dates and locations haven't been set, Quinto said.
Even after providing a blood sample, the potential donor may decline to give bone marrow, Schomaker said.
If donors go through with the transplant, they will be flown to a hospital. For Southeast Alaskans, that probably will be in Seattle, Schomaker said.
The marrow is removed, often from the hip, during a surgical procedure under anesthesia. Donors afterward may feel soreness in the hip, Schomaker said.
"It is pretty intense," Schomaker said. "But at the same time, for that person waiting for the match, that is their only chance at life."
Eric Fry can be reached at firstname.lastname@example.org.
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