Musician's campaign sparks a livesaving bone marrow transplant

Documentary crew: "More to Live For" was made by a group including (from left) coproducer James Chippendale, director Noah Hutton, and coproducer Susan Brecker, the widow of jazz musician Michael Brecker.
Documentary crew: "More to Live For" was made by a group including (from left) coproducer James Chippendale, director Noah Hutton, and coproducer Susan Brecker, the widow of jazz musician Michael Brecker.
Posted: October 10, 2011

The theme from Rocky blared as I stretched with scores of others preparing for this year's Broad Street Run.

It evoked thoughts of another fighter, Philly-born jazz tenor saxophonist Michael Brecker, whose battle with leukemia had much to do with why I could survive the same disease and travel from western Massachusetts to join 30,000 runners this spring.

Brecker - an elite jazz improviser and New York studio musician - died four years ago after he failed to find a match for a bone marrow transplant. But his search for a donor registered tens of thousands of new volunteers and saved the lives of at least 30 people, including me.

His medical odyssey is chronicled in a documentary, coproduced by his wife, that will be shown Saturday afternoon at the Franklin Institute.

When Brecker got sick, his doctors first used the usual channels to find a bone marrow donor. But no match existed among the 16.5 million donors registered with the National Marrow Donor Program (NMDP) and its international partners. So Brecker's family and friends sent out a plea for more people to register.

At the time, he had myelodysplastic syndrome (MDS), which can become a fast-growing cancer, acute myelogenous leukemia, or AML.

One such donor drive was held on Oct. 30, 2005, at the Beth Sholom Synagogue in Elkins Park.

On that sunny day, Washington Township, N.J., resident Denise Gould Ledvina registered with a friend. They got a cheek swab to identify their tissue type (Human Leukocyte Antigen, or HLA) - which matches donors and recipients - and their names went into the registry.

Unfortunately, Ledvina was not a match for Brecker, who died on Jan. 13, 2007. Ledvina, however, was a match for a 53-year-old newspaper reporter and mother of three with leukemia (me).

When asked to donate, she said, "There was no question that I would do it."

I ended up using another donor's cells, but when the leukemia returned, Ledvina was asked again, in late 2008, whether she would undergo the monthlong prep and six-hour procedure. Again, she said yes.

A month later, a bag of the Philadelphia native's strong, healthy stem cells entered my bloodstream as I lay in bed at Brigham and Women's Hospital in Boston under the care of doctors from the Dana-Farber Cancer Institute. The day that I received Ledvina's cells through a catheter implanted in my breastbone - Jan. 31, 2009 - became my new birthday, a chance to start again after four bone marrow transplants.

While I did not know the connection at the time, I now know that it is because of Ledvina - and Brecker - that I get to celebrate each year.

"Michael would have been so happy," said his manager and friend, Darryl Pitt. "I wish that he somehow knew that he was able to contribute."

Susan Brecker said her husband was reluctant to mount a public campaign until he was sure it would also help others. "The work I'm doing builds on Michael's brave decision" to go public, she said.

The major donor banks - NMDP, DKMS in Germany, and Ezer Mizion in Israel - send Pitt and Susan Brecker information on matches made and donors registered. Pitt said more than 35,000 people joined donor banks around the world in events inspired by the saxophonist.

My donor and I met the day before the 2011 Broad Street Run. We had coffee with my friend, Tamar Shelov of Wenonah, N.J., who had invited me to run the 10-mile race.

More than half of the donor-recipient matches are made internationally, and most have no prior connections, but through a case of one degree of separation connecting us, Denise and Tamar already knew each other from sharing the same book group.

Fifty-seven when she donated, Ledvina, a bookkeeper, had a busy life with husband Joe, a financial controller, and their two children.

But she wanted to do more. "I thought about the dramatic ways someone could save a life, like a firefighter running into a burning building," she said. "Stem-cell donation was something that a lot of people could do."

She was excited and scared when preparing for the monthlong process. First, she would have a long phone interview, fill out a health history, and get blood tests and a complete medical exam.

The month would culminate with a week of shots to raise the number of stem cells in her blood, followed by a process called apheresis. Blood is removed through a needle in one arm and passed through a machine that separates out the stem cells; then, the remaining blood is returned through the other arm. It would take about six hours.

"This is one of the most profound things that has ever happened to me. A chance to really live my beliefs," Ledvina e-mailed her daughter Emma. "I just hope it works and she can have her life back."

Stem cells are the undifferentiated cells that develop into any of the more than 200 types of cell in an adult body. The term bone marrow transplantation is used interchangeably with stem-cell transplant.

Two kinds of transplant exist: autologous and allogeneic.

Autologous transplants involve removing a patient's own new, clean stem cells after repeated rounds of chemotherapy have eradicated the leukemia, then returning them to replenish the bone marrow after a final, stronger round of chemotherapy wipes it out.

Allogeneic transplants use donor cells from a relative or unrelated donor or from umbilical-cord blood, which contains large numbers of stem cells. People with leukemia, lymphoma, and other diseases undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor's healthy stem cells are transfused into the patient's bloodstream, where they begin to function and multiply.

Edward A. Stadtmauer, codirector of the Bone Marrow and Stem Cell Transplant Program at the University of Pennsylvania, said the two types have different goals.

He called an autologous transplant supportive care, explaining that the higher-dose chemotherapy and radiation give "a better chance for continuing remission or cure, but you couldn't give an adequate dose if you didn't have stem cells to put back in."

He said an allogeneic transplant is most like a solid organ transplant. It comes with side effects absent in an autologous transplant, but also has an ongoing therapeutic value.

NMDP spokeswoman Catherine Scott said 76 percent of volunteers donate peripheral blood cells and 24 percent give liquid marrow taken from the back of their pelvic bone under anesthesia. It takes four to six weeks for the marrow to replenish. Most return to normal activities in about two days.

AML is a malignancy that arises in white blood cells that battle infectious agents. It develops when there is a defect in the immature cells in the bone marrow.

According to the Leukemia and Lymphoma Society, AML is the most common type of leukemia in adults, with about 10,000 new cases each year.

According to the NMDP, the chance of finding a donor ranges from 66 percent to 93 percent, depending on race and ethnicity. Because they are not as well-represented on the registry and have a more complex tissue type, African Americans are the least likely to find a donor. Caucasians have the best chances.

The NMDP's goal is to register more donors so they can help people with unusual genetic types.

Michael Brecker won 15 Grammy Awards as a performer and composer. He was known for teaming up with his older brother Randy - also a leading jazz musician - in the band the Brecker Brothers.

Michael Brecker also left a mark through solos on pop and rock recordings, such as James Taylor's 1972 "Don't Let Me Be Lonely Tonight."

While I was moved by his solo, like others, I never knew it was Brecker's playing.

But now that connection has become immensely deeper.


'More to Live For' to be screened at Franklin Institute

"More to Live For," coproduced by Susan Brecker, will be screened at 3:15 p.m. Saturday at the Franklin Institute, 222 N. 20th St. She will lead a discussion after the film, followed by a drive to register new bone marrow donors.

Readers can register at Be the Match, sponsored by the National Bone Marrow Donor Program, at www.marrow.org or by calling 1-800-627-7692.

People must be between ages 18 and 60, meet health guidelines, and be willing to donate to any patient in need. Registration involves completing a health history and giving a swab of cheek cells.


Ronni Gordon can be reached at ronnigordon@comcast.net.


 

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