Published: May 10, 2009 08:38 am      

Freddie’s fight

Bevins family takes rare disorder day at a time

VANCEBURG — Recovering from a common cold is not newsworthy.

For Freddie Bevins and his parents, however, it’s an answer to years of prayer.

That’s because white blood cells being produced by the stem cells from a bone marrow transplant the 23-year-old Vanceburg man received nearly two years ago are still working — still allowing Freddie to fight off diseases that nearly killed him several times.

“It is good to know he can fight it,” said Freddie’s mother, Shirley Bevins.

Freddie is not angry about what has happened, though he used to wonder why.

“It could be worse,” he says. “You cannot be around at all.”

Freddie suffers from blood disorders called Hyper Immunoglobulin-M Syndrome (IgM) and chronic neutropenia. In non-medical terms, before the transplant his immune system could not make antibodies to combat most common germs.

Dr. Roger Herzig, director of the center’s Blood and Marrow Transplant Program at the University of Louisville’s James Graham Brown Cancer Center, and his brother, Dr. Geoffrey Herzig, transplanted the donor marrow.

“Through a combination of not having enough immune function and not having enough (white blood) cells to fight acute infections … infections were his biggest problem,” Roger Herzig said. “Some bacteria that wouldn’t infect normal people would infect him.”

For Freddie, a typical day now includes working with his father, Fred Bevins, on the gently rolling hills of the 42-acre farm on Cedar Grove Church Road just off Ky. 989 in rural Lewis County, about 15 miles west of Vanceburg.

It’s riding Brandy, his nearly three-year-old blue roan, white-faced Tennessee Walking Horse, or Bud, his two-year-old American Saddlebred.

It’s helping remodel the family house that sits across a gravel road from the old Cedar Grove Church sanctuary – to the sometime dismay of his doctors. Freddie said there is an upside.

“I’d love to go to work, but I (haven’t) been cleared for that yet,” he said. “ … You don’t have any set time to do anything. Whatever you feel like doing’s what you do. You quit when you want.”

Freddie was diagnosed at 15 months. Throughout his life, he often had to have intravenous fluids every two weeks, and many times the slightest sniffle meant trips to the hospital.

“During the winter, he took his schooling at home,” Fred Bevins said. “… He got cold real easy.”

When he felt good, Freddie tried to be a normal child — fishing and hunting are his favorite activities. He graduated from Lewis County High School in 2004, but attending commencement cost him.

“The next day, I ended up in the hospital,” Freddie said.

Hyper IgM is a hereditary condition — the gene for it is found on the X-chromosome. Girls have a second X (boys have an X and a Y) that can compensate for the mutation, which means girls can carry the gene but not show symptoms.

Shirley Bevins said Brown Center staff told her Freddie’s case is extremely rare.

“He is the only one in the United States,” she said. “There is one in China, a father and three sons in the same family. There is another in another country; I don’t know where it’s at.”

Shirley didn’t know she was a carrier until blood work revealed it when Freddie was 4.

“I cried and I cried and I cried ‘it’s my fault,’” Shirley said. “I still feel like it’s my fault that he had to go through it.”

To be closer to the hospital, in late 2006 Freddie and Shirley rented an apartment in Fairdale, a suburb south of Louisville. They didn’t like city life at all.

“Sometimes that 20-minute (drive) took two hours,” Shirley said. “I’m not exaggerating.”

At his weakest, Freddie lost 60 pounds and weighed 108 (he weighs about 160 now).

In February 2007, Freddie received stem cells in what is called a double cord blood transplant, in which two donors supplied umbilical cord blood. Shirley said it was the first time Brown Center doctors had tried the procedure.

It was an ordeal: nearly three months in the hospital before the procedure; five days of chemotherapy to suppress white blood cells; injecting the new stem cells through a port implanted in his chest; and about a month to see if everything worked.

“It worked for a little bit, just long enough for them to find a match for a stem cell transplant,” Freddie said.

Indeed, by July 2007, the 6-foot-1 Freddie was back in the hospital with a bacterial infection.

“I didn’t know whether he was going to live or die,” Shirley said. “We almost lost him, what, five or six times (throughout his life) due to bacterial infections.”

A marrow donor was found in August 2007, and after more pre-procedure chemotherapy, Freddie received his stem cells. The second time, success — he returned to Lewis County the following October.

There was one setback. In February 2008, Freddie had surgery to remove what turned out to be two spleens.

“I had one that was the size of an NFL football … and purple,” he said. “A healthy spleen’s the size of your fist.”

Freddie and Shirley went home for good last July. The first thing Freddie did was ride his horses — followed by something for which he is smilingly unrepentant.

“I put the roof on the house and put in, like, a thousand bales of hay,” he said. “(Doctors) told me I didn’t need to be in the sun, didn’t need to be on the roof.”

Thanks to “Hunt of a Lifetime,” a nonprofit organization that provides outdoor opportunities for people age 21-under with life-threatening illnesses, Freddie bagged an elk in North Hayden, Idaho last October. He also hooked a 32-inch, nine-pound muskie at Cave Run Lake near Morehead.

“The (elk) antler scored 383 and three-eighths inches of horn mass between length and height and diameter,” Freddie said. “… I like muskie fishing better than anything else.”

Freddie is still “100 percent donor,” which means the stem cells from the donor marrow are producing antibodies.

He takes a small pharmacy of medications. In Shirley’s plastic bag are pills to keep his white blood cells counts steady, liver enzymes at acceptable levels, potassium levels high and prevent the onset of pneumonia.

There are potential perils ahead.

There is enough bone marrow frozen in Louisville for a second transplant if needed, but it would last only another three years. And though it hasn’t happened yet, the risk of Freddie’s body fighting the engrafted stem cells, or vice versa, is also a possibility.

Freddie still wants to hunt for moose or caribou (“hunting for any bigger game in general,” he says). Besides that, he’d be happy just having a job, which may not happen for another five years.

Until then, Freddie will help his dad. Shirley has one more wish: to one day meet the marrow donor. The earliest that could happen is February 2010.

“I want to talk to that person,” Shirley said. “That person saved my son’s life.”