LAKE STEVENS -- At first, Jackie Johnson chalked up her husband's fatigue to the wear and tear of raising four children and launching a new business.
Matt Johnson had opened his electrical contracting business just months before his wife gave birth to twin girls.
"We've had our hands full with four very young children," she said. They have a son, Dustin, 7, and three daughters, Tesa, 4, and 16-month-old twins Taylor and Jordyn. "So between the baby twins and the business ... our lives have been crazy. So I was exhausted, too."
Around Thanksgiving, there was another warning sign. Her 34-year-old husband looked unusually pale.
And again, there seemed to be an explanation. "We had all been sick in our house and Matt just wasn't getting over it," she said. Doctors had given him antibiotics to fight what they thought was a sinus infection.
But when her husband came home from work one evening in December with a jaundiced tint to his skin, she took him to the doctor the next morning. Tests showed his blood levels were dangerously low.
He was told to report to Providence Everett Medical Center immediately to receive a blood transfusion.
About two months later, in February, his blood levels nosedived again.
A bone marrow biopsy showed that he had an aggressive form of myelodysplastic syndrome. The disease, which prevents healthy development of red and white blood cells, can progress into leukemia.
"Other than a bone marrow transplant, there hasn't been any treatment shown to cure it," said Dr. Oliver Batson, an Everett oncologist.
Matt Johnson's brother and a cousin have been ruled out as potential bone marrow donors. So family and friends have organized bone marrow registration drives, including one from 10 a.m. to 7 p.m. today at Marysville Church of the Nazarene.
Another drive is 9 a.m. to 7 p.m. Thursday at Bethlehem Lutheran Church in Marysville.
"This could turn into leukemia at any time," Jackie Johnson said. "That's why we're in such a hurry to find him a match."
It's extremely rare for people in their 30s to have myelodysplastic syndrome. The disease usually strikes people 60 or older, Batson said.
For now, Matt Johnson's treatment is a continuing cycle of frequent blood transfusions to keep his blood levels up. He feels normal for a few days after a transfusion, his wife said, then feels exhausted for several weeks, until the next transfusion.
In some ways, his life has the appearance of normalcy. He continues to operate his business out of a home office. On Saturday mornings, he often helps coach his son's Little League team at Lochsloy Field in Lake Stevens. On Sunday mornings, the family attends church in Marysville. Tonight, they plan to be at Safeco Field to watch the inaugural game of the Seattle Mariners' new season.
But in the background, always, is the unspoken emotional weight of the unknown, wondering when the call will come to say a bone marrow donor has been found.
"That's where we're at right now," his wife said. "Waiting to find a match."
