A match that saved a life: Donor and recipient brought together
Joanne Goerler, whose family owns Jamesport Vineyards on the North Fork, was diagnosed with Myelodysplastic Syndrome, a blood cancer in which blood cells in the bone marrow do not mature, in 2018.
Ms. Goerler was told her only option was to find a donor. “My husband asked the doctor about a second opinion, or about what would happen if we did nothing,” she recalled. “The doctor’s answer was clear: ‘She’s going to die.’”
Ms. Goerler and her husband, Ron, have long been supporters of the Island Gift of Life Foundation, a Shelter Island nonprofit that donates $10,000 annually to the Be the Match marrow donor program. The foundation’s board member, Islander Gina Kraus, is hopeful that a donor match drive planned for June 5 at East Hampton School will help expand the universe of potential donors to provide life-saving transplants like Ms. Goerler received.
Once she was swabbed for the matching process, Joanne Goerler recalled recently, she waited for the registry to find a good match. After two months, some potential donors were identified. Thankfully, Beatrice Rodriquez from Massachusetts had registered for Be The Match 22 years earlier.
“It’s bigger than ‘lucky,’ bigger than ‘fortunate.’ I would say it was ‘amazing,’” Joanne Goerler said, describing her reaction on learning that a donor match had been found for her. “It was very emotional.”
Especially impressive, she added, was that her donor, Beatrice Rodriguez, had made the commitment 22 years earlier to see if her bone marrow could save another life. An immigrant from Brazil living in Massachusetts, Ms. Rodriguez had taken part in a bone marrow drive seeking a match for a young girl. Although she wasn’t a match at that time, Ms. Rodriguez stepped up to keep her commitment when she learned that she was a match for Ms. Goerler.
“So many people offer to be a donor on impulse,” Ms. Goerler said, “then realize that they’re in a different place” when a recipient is found at a later time. “But she stood firm.”
At a minimum, the donor and recipient need to have 10 markers that match; an additional two potential markers are less critical but desirable. “Beatrice and I matched on 11 of the 12 markers,” she said.
Ms. Rodriguez was visiting Brazil at the time so they had to wait a few months for her to return and then quarantine.
In addition to finding a donor, the treatment required Ms. Goerler to undergo chemotherapy for four or five months to prepare her blood. Once the transplant date was set, she underwent six days of intense chemotherapy in September of 2019, then one day of rest and then the transplant, at Weill Cornell Medical Center in Manhattan.
Ms. Rodriguez, at the same time, received injections to stimulate cell growth. Her blood was centrifuged “to take out what they don’t want,” Ms. Goerler explained, and the remainder put back, in a six-hour process.
For Ms. Goerler, the transplant process took 11 minutes, with “a minute amount of a hot-pink-colored liquid.” Six weeks in isolation at the hospital followed, with monitoring as the undesirable numbers in her blood went down to zero. “I had to laugh,” she said, because aches in her legs reminded her of what people tell their children, “it’s just growing pains.” Her medical team explained that those pains were a good sign, meaning that the transplant was working.
Although the treatment was successful, the side effects were considerable. She’d been advised that because the donor was not a relative, the chances for a graft vs. host reaction were high. “Everything they said could happen did,” she said, ranging from a rash to diabetes to a pulmonary embolism. But she endured, and when she reached the one-year mark after the transplant, there was plenty to celebrate.
An even more emotional high point came when she and Beatrice, who had only connected via phone and video, finally got to meet in person recently.
Ms. Rodriguez traveled from Massachusetts to Ms. Goerler’s home in Cutchogue to meet her recipient in person one year later. They were surrounded by Ms. Goerler’s parents, siblings and extended family. “Everyone welcomed her with open arms,” Ms. Goerler said, of the emotional gathering among the vines of her family’s Jamesport Winery.
Beatrice Rodriguez was married and had no children; she likened the experience of being a donor to “making a life.” When she later traveled to Brazil, she and her mother chatted by video with Ms. Goerler, who recalled, “her mother called me her ‘baby daughter.’”
Drive seeks life-saving donors
The East Hampton School Community is hosting a “SWAB FOR LIFE” bone marrow drive outdoor event at John M. Marshall Elementary School on Saturday, June 5 in honor of Joanne Goerler, an adored teacher at John Marshall for over 30 years. Ms. Goerler, whose family owns Jamesport Vineyards on the North Fork, was diagnosed in 2018 with Myelodysplastic Syndrome, a blood cancer in which blood cells in the bone marrow do not mature.
She was told she needed a blood stem cell transplant to save her life. Fortunately, a donor was identified through the national program, “Be the Match.” In September, 2019. Ms. Goerler received a successful transplant of cells donated by Beatrice Rodriguez. Today, she is healthy and on her way to a full recovery.
Shelter Island resident Gina Kraus is a teacher at the East Hampton School and helping to organize the drive. Ms. Kraus is also a board member of the Island Gift of Life Foundation, which donates $10,000 annually to Be the Match as part of their mission.
Be The Match is inviting residents of East Hampton and the surrounding communities on both the North and South forks and Shelter Island to a drive-through, no-touch swabbing event. The June 5 drive will be held from 12 to 4 p.m. in the parking lot of the school at 3 Gingerbread Lane in East Hampton.
Individuals ages 18 to 44 years are encouraged to attend the drive to become part of the Be The Match Registry and have the opportunity to save a life. Participants will be instructed to register from their mobile phones and will be given a quick, painless swab of the inner cheek. It only takes about 10 minutes to register. Registry members will only be called for further testing if they are identified as a potential match for a patient in need of a transplant.
For people with life-threatening cancers, like leukemia and lymphoma, or other diseases, it’s important to know that a cure exists. Be The Match connects patients with a donor for a life-saving marrow or umbilical cord transplant. People can contribute to the cure as a member of the Be The Match Registry, a financial contributor or volunteer.
Every year, more than 12,000 patients turn to Be The Match, the national donor program, to search for a unrelated blood stem cell or bone marrow donor to help cure them of blood cancers like leukemia or blood diseases. Unfortunately, half of these patients will not find the ideal match they need. More young, healthy donors of all races and ethnicities are urgently needed to help diversify the Be The Match Registry. Those unable to attend the event can visit Be The Match.org or text JMMES (one word) to 61474 to receive a cheek swab at their home. For further information, contact: Gina Kraurs , 516-449-0829 or [email protected]; Dr. Ron Jacobs, Be The Match, [email protected]r
