Dance, auction, salmon dinner Saturday raises funds for Matt Johnson’s stem cell transplant
For Matt Johnson and his wife, Jackie, sleep and calm are catch as catch can. Keep the car filled up with gas, check on the kids. Remember to eat.
As one day follows another, their lives have been turned upside down.
The Johnsons — children of Kerwin and Margaret Johnson and Rick and Karen King — are putting all of their energy into saving Matt’s life.
Matt, 34, has been diagnosed with an aggressive form of myelodysplastic syndrome, and there’s concern that it may have progressed already into a rare form of leukemia. According to Jackie, he’ll be receiving more tests this week followed by a biopsy. Matt’s chemotherapy will be based on the results of those tests, but a stem cell transplant will follow.
His hope of seeing his four children — Dustin, 7, Tesa 4, and twins Jordyn and Taylor, 17 months — enter high school depends on the success of that stem cell transplant. Doctors will have to first destroy his immune system to do it and then replace his own bone marrow with someone else’s.
Friday Harbor mobilized two months ago, surprising even Puget Sound Blood Center employees by enrolling 325 people in Matt’s name into the National Bone Marrow Registry. More than 800 people throughout the Puget Sound region have responded in kind.
It’s through that registry that Matt has found six matches that are promising, according to his dad, and two of them are undergoing tests to determine how close a match they might be for his son.
Matt and Jackie’s time, such as it is, is spent commuting to and from “The Hutch,” the Fred Hutchinson Cancer Research Center in Seattle, for tests and other not-so-preliminary medical procedures as Matt prepares for his first round of chemotherapy.
Matt’s mom and Jackie’s parents are spending all of their time parenting their grandchildren. They’ve rented a house in Marysville so they can look after the kids while Matt and Jackie go about the business of surviving.
Kerwin is keeping the family business, Islanders Insurance, afloat, but manages to get there four days a week.
There’s a certain stress in Kerwin’s voice. A practiced matter-of-factness that belies the tension underneath. Kerwin won’t say it, but it’s clear in the brittleness in his voice that the situation is taking it’s toll.
It’s the same with Rick King, as he stands by his children when they’re needing him most. His voice breaks as he related with awe his children’s strength. “Every day is a change, it seems. During this whole thing, Matt has not complained once. He’s been very strong and anxious to get going.
“I don’t know if you’ll put this in the paper, but they have a strong faith in our Lord. I believe our Lord is holding them up with his power and strength.”
Matt and Jackie’s faith is clear in their e-mails. There’s no time to talk on the phone. Their time is spent every day scurrying between medical appointments or headed north, then south, then north again on I-5.
“We are still living at home,” Jackie wrote, “but our days consist of doctors’ appointments, meetings, and tests. People continue to ask us how we are handling the situation so well. We just get up each morning and ask God to help us get through the day. It is definitely one day at a time.”
Matt wrote, “Being on the recieving end is a humbling experience and definitely not a place that we’d ever thought we would be in. I hope the people of Friday Harbor know how much this means to Jackie and me.”
Since it’s Matt’s own blood cells that threaten to kill him, doctors are working to replace them with healthier ones. But it’s not an easy go.
The procedure will essentially kill off Matt’s immune system and destroy his ability to generate new red blood cells. Only when that task is complete will Matt undergo either a stem cell transplant or a bone marrow transplant. Either will work.
But it’s expensive, Kerwin said. “He has health insurance, yes. (But) he had to have a big amount of money going in — $296,000 in order to start treatment.”
Matt is getting some help from his health insurance policy, but much has had to come from other places, some in the form of loans. “Matt and Jackie kind of wanted to do that on their own,” Kerwin said.
Rick King feels the burden quite intensely. He reminds himself to stay open and allow others who care to find ways to show it, and it humbles him to the point of speechlessness and tears.
“When you’re talking about $150,000 to $200,000, we have to be able to receive so that others can have the blessing of giving.” It wasn’t easy for him to get those words out.
Toward that end, the friends of the Johnson and King families are organizing a “fun-raiser” at the San Juan County Fairgrounds Saturday. It starts at 6 p.m. and goes till the dancing stops.
It’s a salmon dinner, live auction and dance party with three musical acts lined up for islanders to come and show they care. And since this community already does so much, it’s by donation, event organizer Diane Hall said.
“We’re trying to be low key beacuse we feel the town’s been hit a lot with things like this. There’s a lot going on.”
Jackie said, “We feel blessed to have come from a community in which after 16 years of being gone, it still supports us. We are thankful for all the people who are giving their time and donations in order to make this benefit dinner and auction happen.”
Auction items include a handmade quilt by Margaret Johnson; a propane stove, installed and donated by San Juan Propane; and San Juan Golf and Country Club greens fees and carts for four.
There are lots of trips to places like Sausalito, Cabo San Lucas, Maui and Costa Rica. There’s a fly-down Costco run complete with gift certificate.
Local Kiwanians, Lions, Leos and Masons are helping in several ways from set-up to clean-up, gathering up items for auction and serving wine and beer. The Ale House has ponied up some of its finest craft brew and the Soroptimists have moved into high gear with their mom-made desserts.
Auction items and donations are still being accepted at Islanders Insurance, 545 Spring St.