Making a difference
In June 2009 Kathy Blessum and several friends in the community organized a bone marrow donor drive in Rugby for Jeanne Berg, hoping to screen a large number of people to be put on the list as potential donors.
Jeanne, of rural Rugby, had been diagnosed with leukemia several months earlier and her friends wanted to do everything they could to aid her in fighting the disease.
Kathy thinks it was Father Tom Graner who first said, “We need to find a donor,” and she and her friends discussed a way to get involved. When, shortly before last June’s drive, a donor for Jeanne was located, the group considered not going through with their event, but Father Graner spurred them on. “We will do it for the solidarity of the program,” Kathy remembers him saying.
At last June’s registration, a breakfast was held and adults ages 18-60 were asked to undergo a cheek swab to determine their DNA, and fill out some paperwork. That information was added to ‘Be the Match’, the name of the national registry.
The cost of having each sample tested is $52. Participants were asked to contribute $25 each. Others at the breakfast, too old or too young for the registry, gave money to help cover the expense. Over $4000 was raised and more than 50 potential donors were registered. “The regional director of ‘Be the Match’ was blown away by the response,” Kathy said.
This Wednesday, April 7, area residents will have another opportunity to be screened and added to the world-wide registry. In conjunction with a blood drive that day sponsored by the Rugby High School Student Council, a bone marrow and stem cell donor drive will be held in Room 115 at the school. “We’re targeting people who might have been out of town (last June) and didn’t have the opportunity to sign up,” said Toni Stevenson, who is in charge of this week’s event. This time there will be no charge to individuals because the cost will be covered by the excess funds given in June.
In late summer Jeanne received a stem cell transplant at the Mayo Clinic in Rochester, Minn. Because it is a global registry, “My donor actually came from Europe,” she said. After the procedure she wrote a thank you letter to her donor and sent it via the registry because direct contact is not allowed for two years. She couldn’t tell the donor who she was, where she lived or where she had the transplant, but she could tell the person the kind of leukemia she had and other medical details. Soon the registry sent a response from her donor. He was a male, 43 years old, with three children. “I would love to meet him someday,” Jeanne said.
There are ten markers, or characteristics, in blood or marrow that doctors would like to have match before a transplant is considered, but they will use a donor with as few as seven matching markers, Jeanne said. “Your chances of having a matching relative are very slim unless it’s a sibling,” she added. “Your children are very unlikely to be a match.” Amazingly, Jeanne and her donor had all ten markers match and even had the same blood type. “It was a perfect match,” Jeanne said, “and since the transplant my DNA has changed to his DNA.”
Just a few months after the donor drive, in an ironic twist of circumstance, Kathy Blessum’s husband, Jerry, was diagnosed with multiple myeloma. “What are the odds?” Kathy asks. “Who would have thought?”
When a stem cell transplant was prescribed, the thought wasn’t as frightening as it would have been earlier. Partly because of Jeanne’s experience, “We had a lot of background knowledge going into it,” Kathy said.
Stem cell transplants are now more common than bone marrow transplants according to Kathy. “But they pretty much use the terms interchangeably,” Jeanne said. Doctors choose the transplant type based on what the patient’s system needs, the kind of illness the patient has, and how advanced the disease is, Kathy said.
Fortunately Jerry did not have to wait for a donor match. He was in good enough health to have his own stem cells used in the transplant. Kathy said doctors at Mayo Clinic explained the process by likening it to farming “You buy good seed (your own stem cells), clean up the ground (kill all the bad components with chemotherapy), then plant the seed (put the healthy stem cells back into your body). It was a time consuming process but not overly invasive.
To keep on track with her husband’s treatments, Kathy kept a journal while she and Jerry were at Mayo. She was responsible for much of his caregiving, his meds, his diet, his schedule. “You can’t believe the medical world you get into,” she says of their experience. “The education in that five-and-one-half weeks is amazing.”
Jeanne and Kathy agree the process is not nearly as arduous as it once was. “They’re learning so much,” Jeanne said. “It’s changing from year to year.”
“Those fears from ten years ago…..well, it’s changed a lot.”
The system for donors is not full of hardships either. “If your DNA matches someone they do more tests,” Jeanne said. “But that’s all they need to get you in the registry.” After a match, the next step is a blood test which can be performed locally. The third step is a physical exam, usually not done locally. But any travel involved is paid, as is food and lodging, according to Kathy. Even lost work time can be reimbursed by grant money, and donors are given three or four chances to back out of the process if they choose.
Organizers of this week’s donor drive are optimistic about the chances of a repeat of last summer’s turnout. Since there will be no cost to those tested they hope a large number of people come forward. Toni, who is in the registry, said, “I just hope somebody from Rugby is a match for someone. Think of the honor.”
She and Jerry observed how grateful recipients at the transplant center were. “Their life has been saved,” Kathy said. “So why wouldn’t you be a donor?”
The April 7 event is from 9 a.m. to 2 p.m. Room 115 is near the RHS gym entrance.
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