Bishop Mark Narum has sent out a letter to his 191 Lutheran congregations in western North Dakota, urging them to participate in a bone marrow fundraising and donor drive inspired by one of his pastors' struggle with leukemia.
The Rev. Jeff Giles, 51, pastor at Zion Lutheran Church in Ashley for the past nine years, and his wife, Jennae, have been staying in Rochester, Minn., since July, while Giles undergoes chemotherapy.
"The congregations have been holding Jeff and Jennae in their prayers," Narum said. "This drive is a way to say, 'We support you.'"
Though the drive is unlikely to produce a transplant match for Giles personally, "the people want to do something to say to the whole family, 'we care,'" Narum said.
Giles was diagnosed in November 2005 with myelodysplastic syndrome which was changing over to acute myelogenous leukemia.
After his 2005 diagnosis, Giles immediately began chemotherapy in Bismarck but couldn't finish due to complications from a virus.
After the initial treatments, two years came and went, during which time Giles and his family held their breath, because the relapse rate is very high during that time, he said.
"We were just beginning to relax,"he wrote, "feeling like we had beat the odds, when at the 21/2-year mark, I began to feel those old symptoms once again." When his doctor in Bismarck confirmed that he had relapsed, he was referred to the Mayo Clinic in Rochester.
The two priorities at Rochester, he said, were to get the cancer back under control and begin the search for a stem cell/bone marrow transplant match. Chemo might give a long-term remission, but the odds are against it, he said. So Giles' only real chance for the long term, he said, lies in an unrelated transplant.
Though Giles said that the chances that a personal match for him would be found through the donor drive are infinitesimally small, he urged people to join the registry to save a life for someone like him in need.
With a bone marrow transplant, doctors would completely wipe out Giles' own bone marrow forever through chemotherapy and radiation and introduce another person's marrow to produce healthy blood cells.
Among the 10 million people in the marrow database worldwide, the chances of finding a match for someone like Giles, a caucasian of western European descent, should be 80 percent to 90 percent, Giles said.
In his case, however, there is not - some roll of the genetic dice, some fluke.
But while Giles undergoes another six months of chemotherapy, the search goes on. Doctors search for a match of 10 out of 10 so-called HLA (human lymphocyte antigen) factors, which Kevin Meyer of the National Marrow Donor Program describes as "the fingerprint of your immune system." When only 9 of 10 factors match, the mortality rate for the recipient rises to 40 percent; with 8 of 10 matching factor, to 50 percent, he said.
That's why marrow donations strive for as perfect a match as possible, Meyer said.
Though people who are on the registry may remove themselves at any time or decline to serve as a donor, Meyer said he hopes that people who register are committed to saving a life and would agree to donate to anyone in need.
After this relapse, the hope is that with the full six rounds of chemo, Giles could have a good remission that will last a long time, though there is no assurance of that. If the remission doesn't last longer than the first, he would have to decide if he would undergo a higher-risk transplant from a less-than-perfect donor.
He and his wife's routine in Rochester involves chemo treatments every six to eight weeks, then daily blood counts and transfusions as needed, sometimes daily trips to the clinic, or twice a day for IV antibiotics.
That his wife is able to act as caretaker means he can do portions of his treatment as an outpatient, he said.
"When you're here and especially the unit Igo to at Mayo (Clinic)," Giles said, "the whole unit is leukemia. The next one is just lymphomas. There is such a huge need for people to be in the database."
Jennae Giles also encourages people to give blood and blood products. "If not for that, I'd have been gone long ago," Jeff Giles said, having received more than 50 units of blood and 30 units of platelets.
The marrow drive, organized by the Revs. Gary Heaton and Rebecca Aardahl, is now in the fundraising stage. Funds raised by Western North Dakota congregations of the Evangelical Lutheran Church in America will help defray the costs for tissue typing.
The cost to process a tissue sample, which is gathered by taking a cheek swab, and to register that information on the National Bone Marrow Registry, is $52 per person. The NMDP will offset part of the cost, reducing the amount to $25.
The goal is to raise $5,000 by Jan. 31, which would allow 200 new donors to be added to the national registry.
Heaton, a chaplain at Medcenter One in Bismarck, said the donor screening drive is planned for March.
Narum is asking his congregations to donate money and also to consider taking part in tissue typing.
For more information, contact Heaton at gheaton@;mohs.org or Aardahl at revreba@;bis.midco.net. Donations may be directed to the ELCAWestern Synod, Box 370, Bismarck, N.D., and specified for the Bone Marrow Registry.
(Reach reporter Karen Herzog at 250-8267 or karen.herzog@;bismarcktribune.com.)
Posted in Local on Friday, January 9, 2009 6:00 pm Updated: 12:20 pm.
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