Principal's child stays strong in crisis.

Byline: Anne Williams The Register-Guard

Thanks to an unwelcome crash course that began in early September, Kennedy Middle School Principal Charlie Smith and his family have a keen appreciation for the need for more registered bone marrow donors.

In the same week Smith was preparing to greet students in his new job as Kennedy principal, his youngest daughter, 18-year-old Lexy, was diagnosed with severe aplastic anemia, a rare and potentially fatal blood disorder in which bone marrow stem cells stop producing essential red and white blood cells and platelets.

It's not clear whether Lexy will need a bone-marrow transplant; her doctors hope less extreme treatments will turn the condition around. Nonetheless, after her two older sisters were ruled out for a perfect match, they've begun an international search, which could take years.

At the suggestion of friends who wanted to help, Lexy agreed to hold a bone-marrow drive - not with the intention of finding her a local match, because the odds of that are about nil, but to raise awareness of the need and the ease with which one can participate in the National Marrow Donor Program.

"I want to help save the lives of people who are waiting for a matching donor for a bone marrow transplant," Lexy said via e-mail Monday, just before heading out to yet another doctor's appointment. "Too many people never find a match and die unnecessarily."

The drive will be held today at McCornack Elementary School, where Charlie Smith was principal from 2000 until this year. McCornack secretary Diane Cordon, who is helping coordinate the drive, said she expects most participants will be Eugene School District employees and friends of the family, but that members of the public are welcome.

"People would do anything for the Smith family," she said.

Lexy first began exhibiting symptoms - mostly extreme fatigue - in midsummer, after graduating from Oak Hill School. "We thought it was end-of-the-summer blues," her father said. "She was feeling a little tired, so we thought, `Let's check her for mono.' They did a blood test and that night she was in the hospital. Her blood count was severely depleted."

The weeks since the diagnosis have been a blur of hospital stays, doctors' office visits and research into the disorder, which affects about three in 1 million people. Smith has had to spend considerable time away from Kennedy, and his wife, Jen Smith, has taken a leave of absence from her teaching job at Meadowlark Elementary.

And Lexy, whose plans to move into a dormitory and start her freshman year at the University of Oregon fell apart with the diagnosis, has undergone a battery of tests and procedures in hopes of boosting her blood cell and platelet count. Each day, she takes a passel of prescription medications, some with objectionable side effects.

Throughout it all, Lexy said she's tried to stay strong and positive.

"The experience has brought my family closer together at a time when my parents were expecting to have all of us out of the house living our lives," she said. "It is great."

The ordeal has changed her in many ways, she added, including opening her eyes to the chemical toxins in the environment. The family doesn't know what caused Lexy to develop the condition, but chemical exposure is one possibility.

"I check labels of everything: makeup, drinks, food and cleaning products," Lexy said.

Other causes of severe aplastic anemia include drugs such as chemotherapy and antibiotics; viruses, radiation, immune conditions and inherited disorders, including Fanconi's anemia.

University of Oregon President Dave Frohnmayer and his wife, Lynn, lost daughters Katie and Kirsten to Fanconi's anemia; a third, Amy, carries the disease.

Smith said the Frohnmayers have been in touch to offer support and expertise.

Last month, Lexy went to Oregon Health & Science University for APGAM treatment, which suppresses the immune system in hopes of jump-starting bone marrow stem cells.

"They lowered her immune system to almost zero," Smith said. "She has to be extremely careful about infection and any kind of injury she might get."

Nonetheless, Lexy, who is taking some online university courses, intends to be at today's drive.

Her blood counts have steadily improved (it's been 30 days since her last transfusion), and the family hopes a marrow transplant won't be necessary.

"We're still reeling from it," Smith said of the diagnosis, "but we're trying to turn this negative into a positive."

BONE MARROW DRIVE

What: The family of 18-year-old Lexy Smith, who is battling severe aplastic anemia, will hold a bone-marrow drive today to boost the number of potential donors in the national registry.

Where: McCornack Elementary School, 1968 Brittany St.

When: 3 p.m. to 6 p.m.

Who is eligible: Adults between the ages of 18 and 60 who are in good general health and are not at risk for HIV or hepatitis

Procedure: Initial screening requires only a mouth swab

Cost: The cost of the testing is $52, although a grant will reduce the cost for the first 100 donors to $25. College students and ethnic and racial minorities, who are underrepresented in the national registry, can donate for free.

For information: Contact Diane Cordon at 687-3451 or [e-mail].