By STEVEN JUPITER
PITTSFORD—Kathy Bauers never used to be allergic to shellfish. Her whole life, she was able to enjoy a shrimp cocktail at dinner or a lobster roll at the beach. But suddenly, in her 60s, her body was reacting badly to the stuff. Turns out an allergy to shellfish was one of the unexpected consequences of the stem-cell transplant she’d received from Caitlin Lekberg, a 29-year-old stranger whose DNA was rewriting all the rules of Kathy’s body. Caitlin was allergic to shellfish, so now Kathy was too.
Back in 2017, before the diagnosis that would necessitate the transplant, life was normal for Kathy and her husband, Charlie, in Minersville, Pa., a small town halfway between Scranton and Harrisburg. Kathy handled billing in a medical office. Charlie had worked for the local water authority and volunteered with the fire department. They enjoyed spending time with their grown sons and their grandkids.
“I was healthy,” said Kathy in a conversation last week at Brandon’s Inn on Park Street. “But I started feeling extreme fatigue. I knew something wasn’t right. I had blood work done. The doctor called and told me to get to the ER immediately. My white blood-cell count was extremely elevated.”
Kathy soon learned she had acute myeloid leukemia (AML), a particularly vicious blood cancer that originates in the bone marrow, where blood cells are formed.
“The doctors didn’t think she’d survive,” added Charlie.
Treatments began right away, and Kathy was able to keep the disease in check, even to the point of remission. But cancer patients live in a constant state of dread, always wondering whether their own bodies will betray them once again. And in 2019, Kathy’s did.
“I relapsed,” she said. “This time the doctors told me the only option was a stem-cell transplant. Without it, I wouldn’t survive.”
But, as with any transplant, it only works if the donor and the recipient are compatible. Kathy has four siblings and expected that at least one of them would be a match. They were all tested but not one of them was suitable.
Meanwhile, hundreds of miles away, Caitlin Lekberg, a Brandon native who now lives in Pittsford, was taking care of her mother in Maine, completely unaware of Kathy’s existence. However, years earlier, Caitlin’s grandmother had died of cancer, prompting Caitlin to look into being a donor to cancer patients.
“I wasn’t able to save my grandmother,” she said, sitting across from Kathy and Charlie at the Inn. “I wanted to help make sure someone else wouldn’t lose their loved one.”
Caitlin got involved with a nonprofit organization then called Be The Match (now known as the National Marrow Donor Program). The program works with blood-cancer patients to find suitable donors of hematopoietic cells (i.e., stem cells that produce blood cells). There’s no charge to the donor or to the recipient for the organization’s services.
Kathy’s oncologist reached out to the program and found Caitlin, who had only been tested one other time for compatibility with a cancer patient and turned out not to be a match for that person. This time, however, she seemed like the perfect donor.
“I was getting very concerned that we wouldn’t find anyone,” said Kathy. “But the doctor assured me that he’d found someone who was a 100% match. I’m a person of deep faith and believe it was God’s plan to lead me to Caitlin.”
At first, neither Kathy nor Caitlin knew the other’s identity beyond gender and age. They didn’t even know where each other lived. The program kept their identities confidential from each other for two years after the transplant, as per the group’s standard policy. Caitlin was told, however, that the recipient was expecting a new grandchild.
“I really wanted to help her see her grandchild,” she said.
The donation wasn’t physically easy for either woman. Though not as invasive as an organ transplant, the removal of stem cells requires penetrating the hip bone to extract marrow. It’s a painful procedure.
“The bag of marrow they took out of Caitlin was huge,” said Charlie.
For her part, Kathy was in the hospital for 30 days after the transplant, which was done at the University of Pennsylvania in Philadelphia. After she was cleared to leave the hospital, she and Charlie stayed at the Hope Lodge in Philadelphia in order to remain close to the hospital for supervision while Kathy’s body continued to assimilate Caitlin’s cells. There’s always a risk of rejection, even with a compatible donor. Hope Lodge is a program of the American Cancer Society that offers free housing to cancer patients undergoing treatment away from home.
Even after Kathy and Charlie returned to Minersville, they had to travel back to Philly frequently for tests and checkups.
“Everything looked good,” Kathy recalled. “It was amazing how well my body accepted Caitlin’s cells.”
“The lab reports kept getting better and better,” Charlie added. “After only two months, Kathy was at 96% chimerism.” Chimerism is a measure of the degree to which a transplant recipient has assimilated the donor’s genetic material. Simply put, 96% of the genetic material in Kathy’s body was now Caitlin’s. Soon after, that figure rose to 100%.
“If Kathy commits a crime, they’ll find my DNA,” joked Caitlin.
“I was feeling stronger and stronger,” said Kathy. “I was always afraid of a relapse, but the marker is 5 years. If you can get to 5 years without a relapse, the doctors consider you cured.”
In 2021, having gotten to a stable place with her health, Kathy wanted to reach out to her donor, whose identity she still didn’t know.
Kathy wrote a letter for her anonymous donor, which had to be screened by Be The Match before it was forwarded to Caitlin.
“It was overwhelming,” Caitlin said of receiving Kathy’s letter. “She told me about being able to see her new grandchild because of me. It made it all seem so real. She was a real person with a real life.”
Eventually the two started talking on the phone. The calls often became intensely emotional.
In 2022, Caitlin made the trip down to Minersville to meet Kathy and her family. Kathy’s 94-year-old mother even came to meet the woman who’d saved her daughter’s life.
“There was lots of tears and hugging,” said Charlie. “Even I got choked up.”
But in March of 2024, Kathy began to feel unwell again. During a routine exam unrelated to her cancer, her ophthalmologist told her he could see leukemia in her eyes. Blood work confirmed the worst: the AML had returned.
“I felt hopeless and scared,” said Kathy, struggling to contain her emotions. “It was right before our 50th wedding anniversary. I didn’t tell Charlie until after the celebration. I didn’t want to ruin it for him.”
“We went back to the University of Pennsylvania,” said Charlie. “I couldn’t believe it was happening. I was so confident she’d make it to five years.”
The prognosis was grave. Even with chemo, the doctors predicted Kathy would have only two years left, and much of that time would be spent feeling ill from the treatments. But there was another possibility: a donor lymphocyte infusion (DLI).
In a DLI, white blood cells known as T-cells are extracted from a donor and infused into the patient in order to trigger an immune response in which the donor’s healthy new T-cells destroy the patient’s cancer cells.
“It was a hard decision to go for the DLI,” said Kathy. “My local oncologist was against it because of the potential side effects, but my oncologist in Philadelphia was for it. I chose to do DLI because I couldn’t see myself going through chemo again.”
An added wrinkle: would Caitlin agree to donate again? It was a lot to ask of someone who’d already given so much.
“It had to be the same donor,” said Kathy. “I was very upset. I didn’t want to burden Caitlin again. But I called her.”
“Tell me where to be and I’ll be there,” was Caitlin’s response at the time.
“I was heartbroken,” said Caitlin at the Inn. “I felt guilty that my cells hadn’t been enough to keep her healthy.”
The extraction of Caitlin’s T-cells was much less painful than the marrow extraction. In fact, she likened it to a plasma donation, though it did take 8 hours. The infusion of the cells into Kathy’s body took place in Philadelphia in June of 2024.
“I feel great,” said Kathy. There will be follow-ups and tests for the rest of her life, but she said she has no regrets about the treatment.
The most notable side effect of the DLI in Kathy’s case is something called “graft vs. host disease,” which is the result of the new T-cells perceiving the recipient’s body as an attack. It can manifest in different ways and in Kathy it’s affected her eyes, which she often keeps shielded behind sunglasses now.
This past weekend was Kathy and Charlie’s first visit to see Caitlin in Vermont and meet her husband and stepdaughter. On Friday, they all went for dinner at Paddler’s Pub on Lake Dunmore.
It wasn’t Kathy & Charlie’s first trip to Vermont, however.
“We came up to look at fall foliage just before my diagnosis in 2019,” said Kathy. “When I found out that my donor was from Vermont, it really felt like it was all part of God’s plan.”
Caitlin bought a house in Pittsford right before COVID hit in 2020 and is a pharmacy technician at Brandon Community Health. Working in the medical field helped her understand the various procedures she had to go through. The staff at the medical center was fully supportive of what she was doing, she said.
These two families are now bonded in a uniquely intimate way, one that very few humans will ever experience.
“It still boggles my mind that someone could be so unselfish toward a total stranger,” said Kathy. “I don’t know if I would’ve had the strength to do what Caitlin did.”
“It’s been very rewarding,” said Caitlin. “I just hope maybe someday someone would do the same for me.”
