The Gift of a Lifetime

Scripture tells us "it is more blessed to give than to receive." And the blessings are all the more bountiful when the gift in question is the GIFT OF A LIFETIME. Martha Teichner will bring us a case in point:


Our story is like the ripples that circle, wider and wider, around a stone tossed in a pond.

It is the story of how a life lost led to a life saved . . . ten years later . . . through a remarkable chain of events that began in 1998.

That was when Alice Winn, assistant attorney general of the Commonwealth of Massachusetts, was diagnosed with leukemia.

Jennifer Winn Aronson showed us a picture of her mother, along with her father and siblings, taken just before Alice got sick.

"I just love it because she looks so happy," Jennifer said.

Soon, Alice Winn would be told her life depended on receiving a bone marrow transplant, and that a suitable donor match had not been found.

So the Winn family organized a very public appeal.

"I have to admit it was purely a selfish motive - we wanted to save my mother's life," said Jennifer. "So we didn't think of the ramifications outside of that."

Aashkenazi Jews like themselves were their best hope for a match. Twenty-five hundred people volunteered - among them, Boston area lawyer Gary Zalkin.

"There was a wonderful energy in the room, and everybody really wanted to help," recalled Zalkin.

"We just assumed that, you know, if we got enough people we would find a match, and that she would, she would dance out of there, which is what she always said," remarked Jennifer.

The drive did not produce a match for Alice Winn. She died three months later at the age of 51.

End of story? Hardly . . .

All those blood samples collected in the drive (along with Alice Winn's) wound up at the National Marrow Donor Program Repository in Minneapolis.

Leila Jones, who runs the repository, told Teichner the freezer is -20º Fahrenheit. She showed us Gary Zalkin's sample, preserved from 1999.

How many samples are in the repository? "There are samples from 2 million donors in this freezer," Jones said.

"The 'Be the Match' registry has 8 million donors on our registry files," said Dr. Jeffrey Chell, CEO of the National Marrow Donor Program. "We also list about 6 million donors worldwide."

Yet Dr. Chell says, that's not nearly enough.

"Our goal is to add at least 500,000 donors to the 'Be the Match' registry on an annual basis for the next ten years," he said.

Bone marrow manufactures our blood cells. In a bone marrow transplant, marrow is extracted from a donor's bones, and is then administered intravenously to a recipient whose blood is diseased. If all goes well, the donor's marrow literally replaces the recipient's and starts producing healthy blood cells.

"Our program is all about paying it forward," Dr. Chell said, "that a person joins on behalf of a loved one, a friend, or a colleague, but ultimately, donates for someone else in need."

Danielle Glosser told us about her son, Adam Riker: "I took Adam for his four month well visit to his pediatrician, and as we were sitting there Dr. Bennett felt that Adam's spleen was a tiny bit enlarged.

"Adam's white blood cell count was through the roof, so Dr. Bennett sent us immediately to the hospital."

Adam looked and acted perfectly normal, so Glosser and her husband, Howard Riker, were in shock.

"You can't help yourself from thinking about 'what ifs' and getting scared," Howard said.

"I look at it now as, leukemia changes everything," said Danielle.

Adam was diagnosed with JMML . . . juvenile myelo-monocytic leukemia.

"JMML is a very, very rare disease that only affects children under the age of five," said Adam's doctor, Leslie Lehmann, who heads the pediatric transplant program at Boston Children's Hospital/Dana-Farber Cancer Institute.

Dr. Lehmann said that, untreated, JMML is uniformly fatal. "The leukemia progresses. It involves the bone marrow and kills off the normal cells, so transplant is, in 2010, the only known curative option for the disease."

As the hunt for a donor began, the Riker family had no idea that Alice Winn, who had been dead for ten years, even existed, let alone that she would have a role in saving their son's life.

Deb Liney did Alice Winn's search and, by coincidence, Adam's as well. Out of the millions of possible donors in the registry, she found just one perfect match.

"I looked at the number, and I thought, 'That looks like a number that's in our donor center,'" Liney said.

From that long-ago donor drive for Alice Winn, it was Gary Zalkin's number.

"Did it ever cross your mind," Teichner asked, "that ten years later, you'd have your moment?"

"No, I forgot all about it," Zalkin said.

"I was all excited," said his wife, Sheri Zalkin, "and when he came home, I had the piece of paper and I was kind of waving it around and said, 'Hey, you know, maybe you can save somebody's life!'"

Sheri was surprised at her husband's response: "He said, 'Well, it's really painful.'"

Gary was reluctant. But the Zalkins have two boys of their own, so saying no wasn't really an option.

"I could miss a day of work and this seven-month old baby gets to live," said Zelkin, "or I could say 'No, I'm not gonna do it.' God forbid it was my child who was sick.

"But from my end, it wasn't such a big deal," he said.

When asked if he experienced any pain or discomfort afterwards, Zalkin replied, "I was a little sore."

That was the good news. The bad news was what he says the doctor at Dana-Farber told him:

"He seemed to say, 'It's probably not gonna work.' So, I told the liaison there that if it worked out well, I'd love to hear from them, and if not, I'll assume they lost my number."

April 16, 2009 was transplant day for Adam Riker.

"I got to hold the bag with the bone marrow," said his mother Danielle. "And I just, you know, really put all my good wishes in the bag. I actually thought it looked like watermelon juice!" she laughed.

Danielle said that's when the stress really started:

"People have postpartum blues; it was like post-transplant blues. Once it happened, it was like, 'Oh my goodness, now what? Now we just wait?'"

For more than a month, they waited in the super-sterile isolation of the transplant ward, until it was safe for Adam to wait back home in Washington, D.C., with his brother Seth.

"No one could come in our house," Danielle said. "Adam couldn't have his stuffed animals. We couldn't have plants near him. We had to Purell constantly."

In a family where Purell became a verb, Adam Riker grew stronger. His parents counted off the weeks, and the milestones.

One year after a transplant, donors are asked whether they want contact with recipients.

"For me, it was very important to know who 'Mr. D' was, and to be able to share our gratitude with him and to share Adam with him," said Danielle.

Zalkin said, "It's a lot more meaningful for them." Or so he thought . . .

. . . Until he and his family went to the party the Rikers threw at a Boston candy store, Sugar Heaven, and he met Adam.

"It's a real boy and a real family; they're real people," Zalkin said. "I didn't expect it to be as overwhelming as it is."

The day was sweet (in so many ways), especially for a mother meeting the man who saved her child's life.

And it was bittersweet, too, remembering that the woman whose family set all this in motion had not been saved.

"They brought so many people into the registry, and but for what they did, it would have been a tragedy, unthinkable - I'm sorry I couldn't be a match for their mom," said Zalkin.

But just by being willing to try, Gary Zalkin was able give her a kind of immortality . . . and Adam Riker, life.

"You can do a small thing, and then ten years later has this huge effect," said Zalkin. "You know, all the more important - do these small things all the time, and you never know what huge impact it will have.


For more info:
danafarberchildrens.org
bethematch.org
Click here to support Team Be The Match.
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