Bone marrow is quite simply the soft tissue inside our bones. It produces red blood cells and is a key part of our lymphatic system which supports the body’s immune system.
Several years ago, a co-worker’s child was dying and the company did a bone marrow donor drive in support. It was simple and quick, you use four long Q-tips to swap each quadrant of your mouth. The sample, and you, along with all the relevant data is transformed into a number that lives in an international database. When a number’s data matches the need of a recipient, you begin the process of exploring the possibility of a match and donation.
I had forgotten about registering all those years ago, so when my friend Laura told me about her step-son and the donor drive she was organizing, I volunteered. Two days later I received a letter with the bone marrow registry’s return address. The letter wanted to confirm that my information was up to date and to tell me that the international registry I was a member of, was merging with Be The Match Registry operated by the National Bone Marrow Donor Program. A lot of corporate changes that mean some folks will be out of work soon. But oddly enough, Be The Match was the program administering Laura’s drive.
At 32 years of age, Steven Mahoney started losing weight, large amounts of weight. He had always been healthy, was a regular blood donor and was, ironically, also a donor on the national registry for bone marrow. At first it was attributed to stress and pressure at work. He developed a cough and when the x-rays came back the news was bad. Steve had Stage IV Hodgkin’s Lymphoma. After almost a year of chemotherapy the news was grave, he was told he had just weeks to live.
A new doctor and a different regimen of treatments arrested the spread of the cancer to some degree and Steve is now fighting to remove the cancer from his bone marrow so he will qualify for a transplant. This was the reason for the donor drive last week. In addition to helping through becoming a donor, Steve’s family has set up a fund to ease some of his burgeoning medical expenses. Please visit www.giveforward.com/fundraiser/bp13/steve-mahoney-cancer-fund.
The coördinator from Be The Match explained that I shouldn’t register again. If I came up as a match, it would appear there were two donors; that would confuse and compound the work. I was assigned to help folks with the paperwork necessary prior to the swabbing. The local bowling alley hosted the drive on Friday afternoon. It was the perfect setting for locals to stop in on their way home from work, grab a beer, chat with friends and swab their cheeks. The outpouring of support and kindness; the comradery among those helping was very emotional.
Before the paperwork and Q-tips, there are few rules. Donors must be between the ages of 18 and 44. Jackie from Be The Match just shook her head when I asked why the arbitrary 44. It has to do with how the funding is distributed. Each swab kit is roughly $150 so funding is not available outside the designated age bracket. If you are 45 to 60 years old and want to sign up, you can register online at Be The Match.org, for a $100 tax-deductible fee to cover the costs. Overall health and speed of recovery are behind the age limits. Once on the registry your information stays until you reach the age of 61.
Jackie recalled her experience as a donor for a nine-year old boy. Donor and patient information are kept confidential for one year in the U.S., two years or forever in other parts of the world. Patients and donors can write each other anonymous letters through the registry. She stayed in touch with her recipient through that first year, then finally met him. He is now twenty-three and they are still in touch.
Years ago the only option for donating was the direct method of removing the liquid marrow from either side of the top of the back of the pelvic bone. Jackie said it was all done under anesthesia and she awoke feeling like she had slipped on some ice; sore but not incapacitated. She was back to normal in a day or so.
Today, 80% of all donations are done by the non-surgical procedure called Peripheral Blood Stem Cell (PBSC) donation. In this case, five days before the donation, the donor is given injections to increase the number of blood-forming cells in the bloodstream. The day of the procedure, blood is removed through a needle in one arm, passed through a machine to collect the blood-forming cells, and the remaining blood is returned via a needle in the other arm. It can take up to 8 hours but is similar to regular blood donation.
This simple procedure does indeed produce the “blood of life.” I encourage everyone to take the time to register today.
Martha, thank you for writing this post. Getting swabbed for the registry is simple, yet potentially life saving for the recipient. It is something that I had never given much thought about until Steven was diagnosed. Only about 20% of people find their match within their own family, so the registry is crucial. I would like to thank you for volunteering and for being on the registry! And thanks to everyone who came out on Friday to get swabbed! ~Laura Mahoney
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thank you, Laura, for all you are doing!
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Wow. Great information from a trusted friend. Thanks, Marth, good job. Send my love to the Mahoney family although I have yet to meet them.
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Thanks Steph. A simple procedure that is so important.
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I would do it in a heartbeat but, alas, I am too old.
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And in four years, Aline, my name will come off the registry, but it is a very worthy cause.
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We have a bone marrow register here in the UK called the Anthony Nolan trust. This was started by the mother of a young boy who needed a transplant. Sadly little Anthony died aged just eight but his name lives on through his mother’s work.
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