Family anxiously awaiting outcome in Kent teen’s stem-cell transplant

Time is the only thing Joey Sexton is counting these days.

The hours and minutes that unfold as her daughter, Jayne Johnson, lays asleep in her hospital bed.

Those hours are the key to a process slowly unfolding in Jayne’s body. While Joey sits in that hospital room, the clock ticking away, it will only be more time before the answers finally come.

“Her body’s healing; she’s sleeping; I’m watching,” Joey said.

Joey, along with Jayne’s doctors, family and friends, are waiting to see if the two units of umbilical-cord blood Jayne has received will do the thing they’ve prayed for, asked for.

They are waiting to see if those bags of blood, rich in stem cells, will give Jayne a new immune system.

Since childhood, Jayne has been fighting a rare disease called Severe Chronic Neutropenia Kostman’s Syndrome. It’s a disease that has affected her bone marrow, resulting in her marrow not creating enough bacteria-fighting blood cells. The disease means Jayne has lived with a greatly hampered immune system, which has affected nearly everything she does. Rendered a virtual prisoner in her home, for fear of getting sick, the Kent teen was finally able to receive a stem-cell transplant from the umbilical-cord blood. The stem cells, it is hoped, will develop into cells for a new immune system for Jayne.

Since Jayne received the stem-cell transplant Dec. 6 at Seattle Children’s Hospital, it’s been a time of monitoring the teen’s blood, looking for the telltale signs of cellular activity that Jayne is developing a new immune system.

Speaking Monday from her daughter’s hospital room, Joey said they’ve seen some flickerings, but not enough to know for sure.

Joey said recently they saw the first of what could be indicator cells that something was happening. The cell count began to increase every day, and then, just as quickly, the count went to zero.

That’s not necessarily a reason to worry – biology is rarely a simple thing, and it’s still too early to tell if “engraftment” – the cells successfully taking to Jayne’s system – is taking place.

“She had her counts come in, they went away real quick,” Joey said. “Right now they’re just coming back.”

In fact, Joey noted, the cells had begun to appear a full eight days earlier than Jayne’s doctors had been expecting.

So everyone will continue to wait.

In the meantime, family and friends have decorated Jayne’s room for Christmas. And on Christmas Day, there will be a small family gathering for the teen.

In an earlier report this month, Joey spoke enthusiastically about Jayne being able to watch the New Year’s Eve fireworks from a room at the Pete Gross House, an apartment complex in Seattle managed by the Cancer Care Alliance.

Now Joey is not so sure about that time line.

“I can still hold onto that little bit of hope,” she said.

How you can help

Jayne continues to receive blood every day – as do many youngsters at Seattle Children’s Hospital. You can help by donating blood. Log on to the Puget Sound Blood Center at www.psbc.org to learn more about local blood drives, or call 206-292-6500.

Jayne’s friends and family are seeking help from the community to improve her living space at home, to ensure her a good environment in which to recuperate. Call Linda Savage at 206-669-2296, or Guy Johnson at 425-344-7446, or visit savejayne.com.