Be The Match donor registry drive in Cokato Saturday
By Kristen Miller
COKATO, MN By age 14, Taylor Tenhoff had already been diagnosed with severe aplastic anemia and had undergone two bone marrow transplants; one that was unsuccessful.
Fortunately for Taylor’s sake, he was able to find a match in one of his six siblings. However, there are many patients in need of bone marrow transplants who don’t have a sibling match and rely Be The Match Registry, operated by the nonprofit, National Marrow Donor Program.
In an effort to raise awareness for the need of bone marrow donors, the Tenhoff family of Cokato is hosting a Be The Match donor registry drive Saturday, Feb. 11 from 9 a.m. to 1 p.m. in the community room of Cokato City Hall. It is also the one year anniversary of Taylor’s second bone marrow transplant.
“We want to increase the amount of donors available,” Taylor’s mother, Monica, said. “The more people that get on the registry, the more potential donors there are.”
In 2008, Katie (Tenhoff) Richter donated bone marrow to her brother, only for it to fail months later. She donated again last February.
“If I had to do it again, I would,” Katie said. “The feeling you get knowing he’s alive because of you is amazing.”
Thousands of patients with life-threatening diseases and blood cancers, such as leukemia, lymphoma, and sickle cell anemia depend on the Be The Match Registry to find a bone marrow match.
According to Be The Match, 70 percent of patients needing a marrow transplant do not have a matching donor within their family.
“Siblings are the best match, but it’s not always a guarantee . . that’s when the patient comes to us,” said Kristine Reed, account executive of recruitment and development for Be The Match, the only marrow registry in the US.
Unlike blood donations, bone marrow does not match according to blood type. Instead, matches are based on the same racial and ethnic background, Reed explained.
“Not a lot of people are aware of that,” she said. “Right now, we are extremely low on the registry of non-caucasion donors,” she added.
The matching process is extremely specific, Reed said. If the recipient’s body doesn’t recognize the marrow type, it will try and fight it, a fight that could actually be fatal, she said.
There are requirements and limits for being on the registry. Donors need to be between the ages of 18 and 60, be willing to donate to any patient in need, and meet the health guidelines.
Reed, who is a leukemia survivor and marrow transplant recipient since 1999, will be leading the registry Saturday. She recommends those interested in joining the registry learn more about it beforehand.
“We want to make sure they are comfortable and willing to donate when they get the call,” Reed said. “If they get the call, it’s because they match a patient who is dying.”
It also costs the organization roughly $100 every time someone is placed on the registry, Reed said, adding that donors are encouraged to give what they can.
The registry process is painless and only takes between 20 to 30 minutes. It includes completing a confidential consent form and a cheek swab. No blood is drawn.
How the bone marrow donation process works
Once the donor has been called upon, there are two possible ways for bone marrow to be drawn.
The most common process is the peripheral blood stem cell donation. Similar to donating plasma or platelets, this is a non-surgical procedure and is requested by doctors 76 percent of the time.
For five days before donation, the donor receives daily injections of a drug that increases blood-forming cells in the bloodstream. On the last day, the donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
The second process is a surgical procedure of marrow donation, and it is requested by doctors 24 percent of the time.
During this procedure, the donor is under anesthesia while the doctor uses a needle to withdraw liquid marrow from the back of the pelvic bone.
Once the marrow is drawn, it is immediately transported to the intended recipient.
Half of the donors on the registry benefit patients from another country, and half of the patients that come to the registry receive a donor from another country, Reed explained. “It works both ways,” she said.
Marrow donors can expect to feel some soreness in the lower back for a few days to several weeks. Reed describes the pain similar to having fallen after slipping on ice.
Marrow donors are typically back to their unusual routine tin two to seven days. All costs are the recipient’s responsibility.
“There could be temporary discomfort,” Reed said, “but keep in mind, you’re giving someone a second chance at life.”
The temporary discomfort the donor may experience doesn’t compare to what the recipient has to go through before the transplant, Reed said, who received her sister’s bone marrow 12 years ago.
Just to put it in perspective, the patient needs full body radiation and intense chemotherapy to eradicate as much existing marrow as possible to make room for new, healthy marrow, Reed explained. “It’s like draining out a tank of gas,” she said.
Even after the transplant, there is a long road to recovery for the recipient, she commented.
To become a potential donor:
For those interested in being on the Be The Match Registry, visit www.tinyurl.com/TaylorTenhoff to learn more about becoming a donor.
To register, come to the donor registry drive Saturday, Feb. 11 from 9 a.m. to 11 p.m. at Cokato City Hall. Baked goods will be available with a free will offering and Dairy Queen coupons will be given to anyone who donates to the cause.
If becoming a donor isn’t a possibility, there is still an opportunity to donate cash toward the cause, which will be used to help cover lab costs associated with being on the registry.
More information can be found on http://marrow.org.