Teenagers aren’t supposed to be fighting for their lives.
At 16, a teenage girl is supposed to be hanging out with her friends, flirting, doing sports, and thinking about the day she’ll drive.
As the mother of a healthy teenage daughter, I have the joy of watching those events unfold: the first dance, the first day of high school, the first crack at being a grownup.
Last week, I had the chance to meet another teenage girl, unfurling a vastly different life plan: survival.
For Jayne Johnson, the hope for an independent life, free of pain, is all that she wants.
She’s willing to die for it.
As our cover story today explains, Jayne is battling a condition known as Severe Chronic Neutropenia Kostmann’s Syndrome. It’s an illness that has caused her bone marrow to begin failing, and her immune system to weaken badly. It’s also resulted in chronic, intense pain – enough to keep her home, wiped out, and away from all those things that teens do.
Right now, Jayne is clinging to the hope that the cure for her disorder will come from two units of umbilical-cord blood. That blood is rich in a special kind of unformed cell – the stem cell – that hopefully her body will use to create a new immune system.
It is a wonderful hope, but it’s also a high-risk one, with opportunities for dire consequences, including death. And there is only so much of the blood – two units – that she’ll have access to for this procedure.
What Jayne really needs is a bone-marrow transplant, although it’ s now too late in her treatment regimen to change course.
A marrow transplant from a matching donor means a better chance at a new immune system, thanks to stem cells that more closely match their host, and a source where more marrow can be obtained – a living, breathing person.
Unfortunately, Jayne was not able to find such a match in time, and instead is resorting to the cord blood. Allow me to reiterate: it’s a wonderful option, a lifesaving option, but it comes with more inherent complexities than a bone-marrow transplant.
This is why I’m calling your attention to the “Be the Match” Registry. It’s a national bone-marrow database where someone like Jayne can go, in the hope of finding a person whose healthy cells can replace her failing ones.
In Jayne’s case, she is of partial Native American ancestry, and her mother Joey wonders if that was part of the complication in finding her a matching donor.
Native American donors make up just 1 percent of the total bone marrow-donor registry. Other ethnic groups that are underrepresented include Asian (7 percent), Hispanic (7 percent), and African-American (8 percent.)
According to information supplied by the registry, tissue types are inherited, making it more likely that people of the same ethnic background can find matches within their groups for lifesavers like bone marrow.
In a place like Kent, we celebrate our cultures – including the International Festival this weekend. But we shouldn’t just be thinking of the big things that make us unique, like dances and food.
We should be thinking of the little things, too.
The microscopic things that could mean the lifting of a possible death sentence for a teenager like Jayne, or a mom with bone cancer, or a grandfather with leukemia.
Volunteering for the Be the Match Registry is a simple procedure, requiring no more than a cheek swab for tissue typing. While there might be a small, tax-deductible fee to help cover the cost of getting the sample tested, any costs to supply bone marrow to a patient are covered by the patient’s insurance plan.
And if you are a match for someone in need of marrow, you always have the choice whether or not to donate. Donation consists of a medical procedure where marrow is extracted with a needle from the back of the pelvic bone, while you are under anesthesia. And it’s not as if you lose it forever, either – your body replenishes itself over a period of several weeks.
It might seem a little uncomfortable on a personal level, but for some of us, the chance of seeing a kid get their life back, perhaps makes it a small price to pay.
To learn more about the bone-marrow registry, go to www.psbc.org/programs/marrow.htm. Or call the Puget Sound Blood Center at 1-800-DONATE-1 (800-366-2831) ext. 1897.
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