Monday, December 12, 2011

Potential Bone Marrow Donors Sought for Registry



On Friday, December 16, Fauquier Hospital will host a Be the Match® event for those who would like to join the Be the Match® Registry for bone marrow and blood stem cell donors. All it takes is a quick cheek swab and filling out some paperwork. With the completion of these two tasks, participants will be members of a nationwide network of potential donors.

The Be the Match® event will take place from noon to 7 p.m. in the Sycamore Room at Fauquier Hospital. It costs $100 to add each potential bone marrow donor to the nationwide registry, but those who join the registry are not required to pay anything.

If a match is confirmed, there is no cost to donors, and in most cases, donating bone marrow involves nothing more than donating blood —a small sacrifice for the chance to save a life.

By joining the registry, participants will be sending a message to thousands of cancer patients that they are not alone. Not all of these potential bone marrow recipients are strangers. There are five young cancer patients in the area right now who could at some point have to rely on the Be the Match® Registry to find bone marrow donors. One Fauquier child is in need of a transplant immediately. (See story, below.)

Parents of Leukemia Patients Take One Day at a Time
Twelve-year-old Sydney Davies of Warrenton has been a patient at Inova Fairfax since July, when she was first diagnosed with AML (acute myeloid leukemia, a rare kind of leukemia usually found only in adults). Sydney needs a bone marrow transplant, and for four months, doctors have been searching unsuccessfully for a match. The seventh grader’s mother, father and brother have been screened, but are not perfect matches.

Sydney’s mother Jen Davies says that oncologists have until late January or early February to find a perfect match. At an event at Fauquier Hospital on December 16, the Be the Match® organization will be recruiting new potential donors (see sidebar). If the right donor is not found, another, much riskier procedure will have to be attempted to save Sydney’s life.

If a donor is found, Sydney will have the bone marrow transplant, then remain in isolation for weeks while her immune system gathers strength. Her mother is hopeful that by the fall, Sydney will be able to return to school at Auburn Middle School.

Jen Davies’ “girlie girl” loves music and playing the violin; poring over the latest fashions and hanging out with her friends and her two Yorkshire terriers. Since her illness, she has been supported by her school community and by other Fauquier organizations. A group from Taylor Middle School created 1,000 Origami cranes, like in the story “Sadako and the Thousand Paper Cranes;” students from P.B. Smith Elementary and Auburn Middle schools created fabric stars with prayer verses on them. Jen Davies said, “They hang all around Sydney’s hospital room so she is surrounded by prayer. They say it takes a village. Warrenton has been our village.”

Many local families have also donated to the Sydney Davies Leukemia Foundation, which Sydney wanted to create in order to highlight the fact that only 8 percent of cancer research is focused on childhood cancers.

There are five other local children who are also battling leukemia. Nine-year-old Owen O’Hara is one of the luckier ones. Diagnosed in January with ALL (T-Cell acute lymphoblastic leukemia), Owen responded well to the months of chemotherapy and radiation and has returned to school at C. Hunter Ritchie Elementary School, where he is a third grader.

Owen is in what is called the maintenance phase of treatment. Until February of 2013, he will have chemotherapy treatments once every three weeks and will see his oncology doctor every week.

He still gets anxious when he has to go in for another procedure, says his mom Jackie, but he has accepted the treatments without complaint. Owen is a quiet boy who likes to draw and read. “Since he had to spend so much time at home with me, he’s learned to cook, too,” said Jackie O’Hara.

Jackie and her husband Jerry O’Hara have both joined the Be the Match Registry® already. They are grateful that Owen doesn’t need a bone marrow transplant right now, but understand all too well what other families are going through and want to reach out to help if they can. They also realize that depending on how Owen’s illness progresses, he could need a bone marrow transplant in the future.

Jackie O’Hara says that she, her husband and their five children have learned to take each day as it comes and not look ahead. “It’s too easy to get overwhelmed if you do that,” she said.

Jerry O’Hara added, “We just count our blessings every day.”


Frequently Asked Questions about Bone Marrow and Blood Stem Cell Donation

Learning the facts about bone marrow donation allows potential donors to make an informed decision about joining the Be The Match Registry®.

Q: How many patients are waiting for a bone marrow transplant? How many will receive one?
A: For 10,000 patients a year, their only hope for a cure is a transplant from someone outside their family. Fewer than half of these patients receive the transplant they need.

Q: Do all bone marrow donations involve surgery?
A: The majority of donations do not involve surgery. The patient's doctor most often requests a peripheral blood stem cell (PBSC) donation, which is non-surgical.
The second way of donating is marrow donation, which is a surgical procedure.
In each case, donors typically go home the same day they donate.

Q: Is donating painful? Does it involve a long recovery?
A: There can be uncomfortable but short-lived side effects of donating PBSC. Due to taking a drug called filgrastim for five days leading up to donation, PBSC donors may have headaches, joint or muscle aches, or fatigue. PBSC donors are typically back to their normal routine in one to two days.
Those donating marrow receive general or regional anesthesia, so they feel no pain during donation. Marrow donors can expect to feel some soreness in their lower back for one to two weeks afterward. Most marrow donors are back to their normal activities in two to seven days.

Q: Is donating dangerous? Does it weaken the donor?
A: Though no medical procedure is without risk, there are rarely any long-term side effects. Be The Match® carefully prescreens all donors to ensure they are healthy and the procedure is safe for them. The organization also provides support and information every step of the way.
Because only 5 percent or less of a donor's marrow is needed to save the patient's life, the donor's immune system stays strong and the cells replace themselves within four to six weeks.

Q: In bone marrow donation, are pieces of bone are removed from the donor?
A: No pieces of bone are taken during marrow donation. Only the liquid marrow found inside the pelvic bone is needed to save the patient's life.

Q: Do donors have to pay to donate?
A: Donors never pay to donate. Be the Match® reimburses travel costs and may reimburse other costs on a case-by-case basis.

1 comment:

Megan (FriedOkra) said...

I wish Sydney and her family the very best and hope a bone marrow match is found for her in this drive. I will keep her and the whole Davies family in my prayers along with Owen, who's my nephew. Thanks very much for this article!