Family Knows Frustration -- Burien Girl Needs Marrow Transplant -- Costly Treatment, Unsuccessful Search For Donor Exhaust Finances

Trust fund

A trust fund has been established for donations to help pay for Katie Sue's bone-marrow search. Friends and neighbors of the Bogaths, together with the Burien Kiwanis and Rotary clubs, are hosting a pancake breakfast and rummage sale June 8 at Seahurst Elementary School, 14603 14th Ave. S.W., to help raise money. The breakfast will begin at 8 a.m., the sale at 9 a.m. in the gym. Call Michael Hansen, 246-3246, for more information or to make a donation.

BURIEN - When 10-year-old Katie Sue Bogath goes out with her mom to buy a pair of shoes, it's a major expedition. Not that she's especially picky.

But Katie Sue can't be around crowds, because she can't be around germs. About a year ago, for reasons no one can explain, her bone marrow stopped working.

She has aplastic anemia, a deadly blood disease that's got her immune system on the ropes.

Her body isn't producing the red blood cells that carry oxygen throughout the body, the white blood cells that fight infection, the blood platelets that clot to seal cuts and scratches.

That means she can't fight infections well. She tires quickly, bleeds easily.

"We have windows of time we know we can go to stores when we know they won't be crowded," said Sharon Bogath, her mother.

For a cure, Katie Sue needs a healthy dose of luck, and a lot of financial help. She'll have to be lucky to find a healthy donor whose bone marrow matches hers. Her father, Fred, her mother, sister and two brothers already have been tested, and they don't match.

As for the money, the expanding bone-marrow search isn't covered by either of the family's insurance policies. Combined with past medical bills and related expenses, the costs already have driven parents to take out a second mortgage on their home, and has swallowed $10,000 contributed by friends and neighbors.

Katie Sue - very politely - says she's frustrated. She's always been active; when doctors diagnosed her disease last year, they were stunned to find out she'd been out playing softball the day before she was in the hospital.

Now, she watches her brothers and sister head off to school each morning, while she stays home with a tutor, in an environment as free of germs as her mother can manage. She misses being in class with her fourth-grade friends. She's tired of the medicines, of visiting the hospital three times a week.

"It's sort of like, what's going on? Why don't the doctors study this?" she says. "My little brother goes to his Boy Scouts, he has soccer, my older sister has softball. . . . Why can't I do those things?"

It's not much easier on the rest of the family, says Fred Bogath.

"It takes 100 percent of our time just to keep the family operational," he says. The Bogaths run their own computer and printing-supply business, and have tried to stay involved in their other children's school activities, though they've had to cut back some in the past year.

Sharon Bogath minimizes the difficulties.

Still, she adds, sometimes it's hard to wind down.

"Showers are nice. You can cry in them and no one hears you," she says.

Fred Bogath says he feels particularly frustrated because early last year, before Katie Sue's condition was discovered, he and his wife had bought a new health insurance policy from U.S.A. Health Care, in Dallas, Texas. Like many policies, it said any illness diagnosed in the first 30 days wouldn't be covered for at least two years.

The policy took effect March 1. On March 29, Sharon Bogath took Katie Sue to the family doctor because of an earache. The doctor noticed she looked pale, but attributed that to the ear infection. Medicine cleared up the earache, but at a follow-up visit a week later Dr. Frederick Hazeltine of Burien noticed that she still looked pale. He ordered the blood test that discovered the aplastic anemia.

U.S.A. Health Care officials maintain that because Hazeltine had first noticed that Katie Sue looked pale at the March 29 visit, her illness manifested itself in the first 30 days, and is therefore not covered.

Toby Wilson, general counsel for U.S.A. Health Care, said yesterday that in any event, the Bogaths had failed to note in their application that Katie Sue was diagnosed at birth with thrombocytopenia, or a low count of blood platelets.

"Had they been truthful in the application, we wouldn't have issued the policy to begin with," he said.

In a letter responding to the state insurance commissioner's office, to whom the Bogaths had appealed for help, U.S.A. Health Care linked the thrombocytopenia to the aplastic anemia.

But Dr. Laurie Milner, a pediatric hematology fellow at Children's Hospital and Medical Center in Seattle, referring to blood conditions in general, says there is no proof of any connection between the two conditions.

Assistant Deputy Insurance Commissioner Bill Wilson says the questions in this case probably only can be answered in a court of law. Fred Bogath says the family's been too busy to talk to a lawyer yet.

"Their goal in life seems to be not to pay a claim," he said of the insurance company.

At this point, the Bogaths are concentrating on finding a donor who matches the rare sub-groups in Katie Sue's blood, searching through the family tree for relatives who may share her genes.

Each test costs $360, Sharon Bogath says. A full search of the U.S. bone-marrow bank costs about $30,000, she says, adding that the Bogaths also have contacted France's bone-marrow bank.

If a suitable donor does turn up, the transplant would cost $185,000, according to a spokeswoman with the Fred Hutchinson Cancer Research Center. The Bogath's second policy, King County Medical, will cover 80 percent of that, leaving the family a $37,000 bill, Sharon Bogath said.

In the procedure, Katie Sue would be bombarded with what would normally be - without a transplant - lethal doses of radiation and chemicals, wiping out her bone marrow and what's left of her immune system.

Then she'd be injected with healthy marrow cells from a suitable donor, in the hopes the new cells would grow to replace the marrow she'd lost.

Many of the Bogaths' neighbors are trying to help raise funds.

"A sick child is everybody's daughter," said Michael Hansen, the father of one of Katie Sue's school mates.