Veteran finds himself in another struggle with a deadly enemy: leukemia

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FINDLAY - Coy Thomas fought in the jungles of Vietnam. Now the 60-year-old Findlay man fights for life.

Thomas served in Vietnam in 1967 and 1968 after being drafted while working at General Electric Co. in Decatur.

Today his yellow ranch-style house is filled with reminders of his time as a soldier. Thomas' two Purple Hearts, Bronze Star and Combatant Infantryman Badge hang just inside the entryway of his home. An American flag flaps in the front yard.

Thomas returned home from his service in Vietnam thinking the physical dangers he faced in combat were behind him.

"I don't have any regrets; I guess it's what you would call it," he said. "It was all part of growing up back then. You got drafted. You went."

But Thomas didn't know the millions of gallons of Agent Orange, an herbicide sprayed by the U.S. military to defoliate the country's lush, leafy jungles in which he fought, would affect him 30 years later.

"We thought it was great," Thomas said of the defoliant. "It was killing the jungle so we could find them. But they didn't tell us it was killing us, too."

In 1999, Thomas was diagnosed with chronic lymphocytic leukemia, a disease linked to Agent Orange exposure in 2003. Because Thomas' condition joined a list of diseases connected with service in areas exposed to the chemicals, he receives full disability coverage from the U.S. Department of Veterans Affairs. This is the only health insurance Thomas has.

During Thomas' initial fight with leukemia, doctors simply watched his blood. Around 2005, the lymph nodes in his neck became enlarged, and Thomas needed chemotherapy. He has been on and off different medications since then and is currently participating in a drug trial.

Thomas said the side effects of his medications and treatments are the most difficult part of his illness. He has lived with fatigue, skin problems and mouth sores so painful he couldn't eat.

But even through all this pain, chemotherapy can't cure Thomas' leukemia. Because of the progression of his disease, Thomas needs a transplant to give his body stem cells to stimulate production of his own blood-forming cells. The Nashville, Tenn., VA has approved Thomas for a matched, unrelated bone marrow or peripheral (circulating) stem cell transplant to fill this need.

Thomas has waited for three months to hear from National Marrow Donor Program. But so far, no match has come.

Several marrow typing drives have been organized in Thomas' name to get local residents on the national marrow registry. The test to do so is painless and involves tissue typing, which can be done from a simple cheek swab. Thomas' girlfriend, Nancy Beem, said she doesn't understand why more people across the country don't sign up to be on the registry.

Thomas met Beem, 62, when they were growing up in Findlay. They knew each other as youngsters and reconnected about six years ago. Thomas asked Beem to the Spoon River Valley High School prom while she was working for the school district near Peoria.

Thomas said Beem is his biggest supporter and best friend. She goes with him to his appointments and the frequent blood transfusions that keep his hemoglobin levels up. Beem organized several of the local marrow-typing efforts.

"She kind of keeps my spirits up," Thomas said. "To be truthful with you, I'd have probably died in 2005 if it weren't for her."

For now, Thomas and Beem spend their days waiting, cautiously hopeful that a match will come. But recently, a new source of hope arrived.

Beem regularly checks a Web site run by CLL Topics, a group dedicated to fostering support, advocacy and education for chronic lymphocytic leukemia patients and their loved ones. Beem said she communicates online with one of the group's co-founders, Chaya Venkat, a retired chemist whose husband is battling the disease.

Through Venkat, Beem and Thomas heard about promising treatments being done by doctors at the University of Minnesota Cancer Center. These treatments involve transplanting umbilical cord blood, human blood taken from the umbilical cord at the time of birth - a source rich with the stem cells Thomas needs.

"It's easier to match umbilical cord blood," Beem said. "You don't have to match as many factors."

A match with umbilical cord blood is more likely because a recipient must have fewer of the same markers to prevent rejection.

Through the VA, Thomas has been approved for a bone marrow or stem cell transplant, but he has not yet gotten approval for an umbilical cord blood transplant.

When he heard about the possibilities in Minnesota, Thomas put in a call to the Nashville VA, where his current transplant is approved. He said he was told the facility recently had started doing cord blood transplants but currently has no protocol for a person of his age with chronic lymphocytic leukemia.

Beem said she thinks this ineligibility for the treatment in Nashville has to do with the aggressive nature of the pretreatments.

So the choice was simple - either wait for the protocol or act on their own. The couple chose the latter. Thomas is working on getting accepted into a cord blood transplant clinical study at the University of Minnesota. He will pay $800 out of his own pocket in early February to find out if he is a treatment candidate.

"We don't know for sure that Coy will be able to get in because one of the things that has to happen before treatment is you've got to knock the cancer way back," Beem said. "And that kind of aggressive treatment can leave you really vulnerable to infections …."

If Thomas is eligible, his only option to move forward in the study is to convince the VA to pay for the cord blood transplant that could save his life.

"We're not at that point that we know they're going to turn us down yet," Beem said with a note of tentative optimism. "But our game plan is to first see if he can be accepted on a clinical basis at Minnesota."

With Thomas' treatment outlook riding on the availability of a transplant, he said his only option is to live each day with Beem by his side and the support of friends and family who provide him with humor, grace and hope.

"I try not to think about it, I guess," Thomas said. "Because I know it might happen or it might not happen."

Plans for travels to the natural beauty of Wyoming and Montana and turkey hunting in April are on hold for now. And Thomas and Beem remain optimistic that the trip to Minnesota will bring new hope and another chance at life.

"We don't know what's in store on that," Beem said. "We just got our little toe in the door, that's all. We know that."

Annie Getsinger can be reached at agetsinger@herald-review.com or 421-6968.

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