Wednesday, July 21, 2010

My mom and the Be The Match Registry

This post is an unpaid endorsement for the Be The Match Registry, a nonprofit organization that matches willing, unrelated stem cell donors with patients who need a life-saving transplant. To become a registry member or donate to the cause, visit

My mom was diagnosed with acute myeloid leukemia at the end of May. I am happy to say that she is in complete remission and finished her first round of consolidation chemotherapy Saturday. Consolidation is a type of chemo given to patients who are in complete remission after receiving induction chemotherapy. You can think of consolidation chemo as a way of kicking the cancer when it is down.

She has handled her treatment well, and her body has responded in the best ways possible. Her immune system will be weak after treatments and strong after recoveries, but her spirits are consistently high. She is often out and about in Chapel Hill and Durham.

My mom's cytogenetic profile signaled doctors that she is at a high risk for relapse, so getting an allogeneic stem cell transplant is her best chance for a cure. Allogeneic means that the transplant will come from another person. Stem cells are cells that produce all types of blood cells.

Allogeneic transplant donors can be a related family member or an unrelated donor. Doctors examine cheek cell swabs from the patient and prospective donors to determine the best match. My family is hoping that my mom's sister, Martha, will be a good match for my mom. Doctors say that a sibling will match 25 percent of the time. Parent and child matches are even less common.

If Martha does not match, the hospital will match my mom with the best-fit donor from the National Marrow Donor Program's Be The Match Registry, a list of people who have pledged to donate bone marrow or stem cells to any patient in need of a transplant. Doctors told us that my mom will more than likely find a suitable donor in the registry because she is white. The registry encourages anyone to join because a larger pool of donors will produce better matches for all patients, but they also urgently need donors who are black, American Indian, Asian, Pacific, Hispanic and of multiple races.

The NMDP has facilitated nearly 40,000 transplants worldwide. Seventy percent of all allogeneic transplant patients do not match with a family member and need an unrelated donor match. The chance that two random individuals are a suitable match is one in 20,000. Many donors are not only the best match for a patient; they are the only match on the registry of 12 million people.

My sister and I joined the registry online and are letting our friends know about it. Be The Match sent us cheek swabs and information, and we swabbed and sent them back. The donor process is virtually painless and completely free. Be The Match reimburses all travel and related costs for all donors. Most people we know in the registry have never been called to donate but pledge to do so when a patient needs them.

Doctors draw donations through a marrow harvest or a peripheral blood stem cell donation depending on the patient's needs. You are probably most familiar with a marrow harvest, which is actually the least common donation method. It is a surgical, out-patient procedure in which doctors use anesthesia and needles to withdraw liquid marrow from the pelvic bone. My mom is terrified of needles and had several bone marrow biopsies; she said they were easy. She gets goofy drugs for a few hours, but she never experienced pain. She prefers a marrow harvest to a needle prick without anesthesia.

PBSC donations are much more common. For five days before the donation, the donor receives daily injections of a drug that increases blood-forming stem cells in the bloodstream. On the fifth day, the donor's blood is removed through a needle in one arm and passed through a machine that separates out the stem cells. The remaining blood is returned to the donor through the other arm. The process is similar to donating platelets. Donors may experience a headache or bone or muscle aches before the collection.

Deciding to join the registry is a very personal decision. I did not know I had the opportunity to be someone's living best chance at life before my mom got sick; I thought only family members could donate. I want you to know that you could be someone's best chance if you decide to join the registry. Receiving a transplant is a transplant patient's best or only hope for a cure.

Please ask me questions if you have any even though you can probably get all your answers at Joining the registry is quick and easy. The site also accepts donations that help to aid families with uninsured transplant costs, fully reimburse donors, fund medical research and add donors to the registry.

People tell me that they think about and pray for my family often. I always think about them in return whenever we get good news. I hope our next good news will be that my mom has a match.

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