How you can help transplant patient Jayne Johnson with her gift of life: Editor’s Note

If Jayne Johnson gets her wish, she’ll be watching the Seattle New Year’s fireworks from a very special vantage point.

It won’t just be the room she’s in.

It will be because Jayne, 16, will have survived the most intense medical procedure of her life.

If all goes as hoped, Jayne will be on the downhill side of a transplant that will give her the chance for a normal life.

For now, though, she’s weathering the combined effects of intense chemotherapy, and the introduction to her system of umbilical-cord blood, delivered via a catheter in her chest..

The chemotherapy destroyed what was left of Jayne’s immune system.

The cord blood, rich in stem cells, hopefully is giving her another.

Right now, all Jayne, her doctors and her family can do is wait and pray.

“We’re at day six (since the transplant) and the doctors say she’s exceeding expectations,” Jayne’s mother, Joey Sexton, reported Tuesday from Seattle Children’s Hospital, where Jayne has been receiving the treatment.

“She’s doing very, very well,” Sexton said.

Jayne, although tired and nauseous, sounded full of fight in a phone interview from her bed.

“I’m staying strong,” she said.

For nearly all her life, Jayne has been living with a disease called Severe Chronic Neutropenia Kostman’s Syndrom. It’s a condition that has affected her bone marrow’s ability to create certain white blood cells that stave off bacterial infections. Although bolstered for years by powerful drugs, Jayne’s immune system has been slowly failing. It’s culminated in the teen becoming a virtual prisoner in her own home, thanks to the ever-present fear of illness, and the ever-present condition of being exhausted and in pain.

For years, Jayne’s doctors unsuccessfully tried to find a matching bone-marrow donor, so that Jayne’s marrow could be replaced with healthy marrow.

Recently, hope came in the form of two bags of umbilical-cord blood that were a match. While they couldn’t deliver marrow, they would introduce stem cells – a nonspecific kind of cell that can develop into specialized cells, like bone marrow.

The hope is that these two bags of cord blood will create a new immune system – and a new life – for Jayne.

But right now it is a waiting game.

“We’ll just see how it goes,” Sexton said Tuesday, noting that with cord blood, it takes about three weeks to determine whether the cells are doing their job. The daily lab tests on Jayne will enable doctors to see those first flickerings of a new immune system.

If all goes as hoped, Jayne will be out of Children’s Hospital in a month. She’ll continue her recovery in the Pete Gross House, an apartment complex in Seattle managed through the Cancer Care Alliance that is just for cancer patients and their family.

Jayne and her mother are excited about her room there. Looking out at the Space Needle, it will afford the teen a commanding view of the New Year’s Eve fireworks.

Jayne will get her view of the fireworks, if all goes as anticipated.

“We’ll be there,”Sexton said. “We’ll definitely be there.”

If the stem-cell transplant is successful, Jayne will need about a year of recovery time so that her immune system can fully develop.

With that in mind, it’s important to note that it will be quite some time before Jayne is out of the woods.

While the umbilical-cord blood has essentially functioned as a gift of life, Jayne still greatly needs other gifts as well.

The family is accepting donations to help offset the cost of her medical treatments, as well has the items she will continue to need as she recovers.

Another tremendous need is getting Jayne’s house prepared, so that she can live in an environment that will help keep microscopic foreign invaders from tampering with her immune system.

“After transplant, a person is still isolated to home while the new immune system builds,” Sexton wrote in an e-mailed update about Jayne. “The body is very fragile and susceptible to bacteria, fungus and mold, and viral infection. We would like to do our best to avoid any of this and make Jayne’s home environment as safe as possible.”

Sexton said they are seeking the following items to help keep Jayne’s living space clean: six vinyl windows with installation, a Mr. Slim heat/air-conditioning wall unit by Mitsubishi, a Hepa air-filtration system, new decking material, and ramp to the home.

The family also would be grateful for a small, heated outdoor dog kennel for Jayne’s two miniature Pinschers, Tyrone and Taffy, who are currently living at a kennel, while Jayne is in the hospital.

“It would be possible for the dogs to come home to Kent with some restrictions/guidelines to keep Jayne safe,” Sexton wrote. “It would be a great comfort to Jayne to be able to see her pups daily even if it was from a distance.”

If you would like to help, please contact Linda Savage 206/669-2296 or Guy Johnson 425/344-7446 or go online to: savejayne.com.