Grateful Transplant Recipient From Shinnecock Hills Invites Others To 'Be The Match'

Whenever Linda Ashcraft looked up at a plastic bag hanging from a pole, an IV bag filled with life sustaining blood or life saving stem cells donated by strangers, the Southampton woman was grateful.

“You are thankful and grateful every time you look at that bag. Somebody did this, thank God,” she recalled recently, sitting in the bright and airy great room of her charming Shinnecock Hills home.

The 2017 recipient of a stem cell transplant, this week she celebrated the news: “I now have antibodies for the first time in years.”

She’s had all the COVID vaccines but is so immune compromised, she explained, that “they didn’t take.” Her transplant doctor helped get her on the list for the prophylactic Evusheld, a new monoclonal antibody designed to prevent COVID-19 infection in vulnerable patients who may not respond adequately to the COVID-19 vaccination. “You take it in an effort to not get sick,” Ashcraft explained.

Her latest lab results showed she now has antibodies. “I finally have some kind of defense,” she said. “I would not make it if I got sick.”

Diagnosed with a rare blood disorder, primary myelofibrosis, in 2010, Ashcraft embarked on a lengthy journey of tests and treatment, some of which continue today. Terms like myeloproliferative neoplasm roll off her tongue the way the words “pandemic” and “social distance” have become part of the average American’s lexicon.

In 2010, when her doctor took note of worrisome lab results, she was sent to a “hemonc,” a hematologist oncologist. An array of exams ensued, including a bone marrow biopsy — “They dig into your bone” — to diagnose her disease, a chronic form of leukemia.

By fortunate coincidence, Mount Sinai is home to a specialist in the rare blood disorder she has. The disease has a variety or trajectories, she learned. “Things could go bad or you could live for the rest of your life and die from something else,” she said.

She decided to watch and wait. But her bloodwork got worse, and two drug trials only produced results for limited times.

Still, Ashcraft said, “I felt good, I was living an active life in the city,” and when she and her husband, Ward, came out to their Southampton haven, they mountain biked during the winter and paddle boarded during the summer. She ran marathons and, in her 50s, she said, “I was still running. Slow, but I was doing it.”

The medication from the clinical trials made her anemic and over time she became “transfusion dependent,” going to Mount Sinai every two weeks.

“You wonder who you are becoming, sitting at the doctor, hooked up to this bag,” she said, marveling, “It is amazing people donating blood is so important, so critical. You are so beholden to having access to blood as a blood disorder, cancer person.”

After another biopsy in 2016, “My doctor said, ‘Linda, this is your window of opportunity to have the transplant.’

“I really never thought this would happen to me,” she continued. “At Mount Sinai, one wing of the building was hemonc, and the other wing was for transplants. I thought I’d never have to go to that side of the building.”

Early on along the path, Ashcraft’s bloodwork had been sent to the transplant section to be matched with a donor just in case. Her sister was not a match.

Her doctor told her the organization Be The Match had located a donor, one that was a 10 of 10, a perfect match. A 38-year-old ex-Navy man from Ohio, the donor wanted to do something to give back after his father was diagnosed with Alzheimer’s disease. Contacted years later, his father had passed. Still, he agreed to be Ashcraft’s donor, and flew to Washington, D.C., for the procedure.

“When my friends found out I needed a transplant, the first thing they all said was, ‘If you need a donor, I’ll be tested.’ I already had a donor, and what I didn’t think to say was, ‘Do it anyway for all the other people,’” Ashcraft recalled.

Describing bone marrow donation as “a project,” she said donating stem cells is less cumbersome and painful for a donor.

Doctors told her the transplant itself would be anticlimactic, “just another bag hanging from the pole.” But in preparation, she spent five days in the hospital having surgery to implant ports and chemo to kill off all her own blood cells. Then came the bag and transfusion of stem cells. “Their job is to start growing in your bone marrow and start repopulating your body,” she said.

Repopulating with healthy blood cells, but also with another person’s DNA. “You’re like a two-person person,” Ashcraft quipped.

Hooked up for yet another transfusion, she remembered, “I’m looking at this bag and I’m thinking my life hangs in the balance of this bag. I was very emotional. It took about three hours, you’re feeling nervous and intense and excited. You think, ‘This is it, this is my chance at life.’”

With her bone marrow full of fibrosis, meaning full of scar tissue, recovery was a slow process. She and her husband stayed in the city, and she was in the hospital several days a week being checked and treated.

Ahead of the pandemic trend, Ashcraft wore a mask and gloves everywhere she went, though her life was lived mostly in the apartment and hospital.

When the pandemic came, the couple already knew how to isolate. After 100 days post transplant, she was able to come back to her Shinnecock Hills home and be away from the hospital, only traveling to New York once a week.

“It’s been a journey,” Ashcraft summarized.

Thankful for the treatments and tests, medications and clinical trials, plus the life-saving donation, she recently began to volunteer as an ambassador for Be The Match.

Operated by the National Marrow Donor Program, Be The Match connects patients with their donor match for life-saving marrow or blood stem cell transplants.

In 1979, 10-year old leukemia patient Laura Graves underwent the first-ever bone marrow transplant from an unrelated donor. It worked, and her grateful — there’s that word again — parents, Robert and Sherry Graves, founded a national registry of volunteers willing to donate bone marrow. Its first year, some 10,000 donors stepped up, and they conducted their first transplant as the National Marrow Donor Program in 1987.

“This is an organization that I wasn’t really familiar with when I needed their life-saving services,” Ashcraft said. “It is incredible, life-saving work that they are doing and my volunteer work is part of the efforts to communicate with our House and Senate members to make them aware of this life-saving work that NMDP/Be the Match provides and to ask our congresspeople to fund the national registry when approving the annual budget to insure NMDP/Be the Match can continue saving more lives every year.”

In addition to requesting funds, Be The Match is working for a Federal Donor Leave Policy.

The time it takes to undergo donation procedures can be an obstacle for some people who would otherwise give. The goal is to ensure that people who have volunteered to donate for Be the Match and are in the registry, will be guaranteed to not lose their job if they are, in fact, called to be a donor, Ashcraft explained. It would provide 40 nonconsecutive hours of leave — the estimated time required for tests, the stem cell procedure, travel, etc.

An organization catchphrase is: The cure for blood cancer is in the hands of ordinary people. That was true for Ashcraft, who received her donation from a stranger and now wants to encourage others to donate and support Be The Match’s efforts.

Visit BetheMatch.org to learn more.