Marrow-donor search for young girl expands to benefit others

Tuesday, November 23, 2004

When Amy Katz at age 11 was diagnosed with leukemia in the autumn of 2003, her family mobilized an actual army to fight for her. They drafted volunteers from beyond their family circle -- friends, neighbors, business and professional contacts, church and synagogue members and families and coaches from every sports group the athletically inclined Katz family had ever encountered.

Alyssa Cwanger, Post-Gazette Amy Katz, right, and sisters Jennifer, center, and Katie play cards at their grandmother's house in Mt. Lebanon. Amy's sisters were not marrow matches for her, but are perfect matches for each other. Click photo for larger image.

When it became apparent that a bone marrow transplant was Amy's best hope for a cure, Amy's Army mounted a campaign for a donor drive. The battleground was quickly extended beyond the borders of their Mt. Lebanon hometown.

The HLA Registry, the national bone marrow registry, "discourages families from doing drives because they do not want people to have false hope," said Kate Rosenthal of Mt. Lebanon, a close family friend and treasurer of Amy's Army. "There have been families that mortgaged homes to pay for drives, and we were told that statistically our chance of finding a match for Amy are slim."

Soldiers in Amy's Army were told they would be "lucky" if they could round up 250 people to have blood drawn. Blood is tested to see if the donor is compatible to provide bone marrow, from which stem cells could be collected for a transplant.

A total of 1,628 potential donors were tested in the first Amy's Army drive on Feb. 28 at Temple Emanuel in Mt. Lebanon.

"We were dumbfounded by the numbers," said Dolores Dauenheimer, director of the HLA Registry. "Amy Katz's family and friends are phenomenal at getting people to volunteer." Their second drive drew 500 during a snowstorm, Dauenheimer said, and a third one Downtown drew, 1,143 donors.

None of the 3,271 donors is a match for Amy, but the three drives have produced 13 potential matches for other people. Five of those may lead to life-saving transplants for people with leukemia, aplastic anemia and other blood diseases.

HLA Registry representatives also are dumbfounded by the high number of potential matches produced by the drives.

		More information To donate a blood sample through the Central Blood Bank, call 800-310-9551 to make an appointment or to get a date and time for another blood drive. Use Amy's blood band tracking number, z0020553, for your paper work. You can also visit http://www.amysarmy.org/or call 1-877-243-4269.

"Many of us think it is God's hand, and I'm not a real religious person," said Andrea Fitting, a longtime family friend and one of the first to enlist in Amy's Army.

The HLA Registry has 212,000 donors on the registry, none a match for Amy. That registry has facilitated 703 transplants since 1989.

In addition, Amy's Army has signed up more than 1,000 donors at nearly 40 smaller drives for the registry of The Gift of Life Bone Marrow Foundation. It was founded in 1991 to recruit donors of Eastern-European Jewish ethnicity.

"It would be a miracle if we found a match for Amy," Rosenthal said, "but we can encourage people to get on the registry. We hope to create an energy that spreads" to other families, including sharing fund-raising and donor-drive strategies.

No more soccer

Amy Katz is now 12 and a seventh-grader at Jefferson Middle School in Mt. Lebanon. Her type of cancer, chronic myelogenous leukemia, is very rare in children. She is getting experimental chemotherapy treatment in daily pills, but her best chance at a cure is a bone marrow transplant.

She still has her blonde hair and generally doesn't feel sick, though the pills cause some joint pain and fatigue. She attends school as usual, except for periodic hospital visits for X-rays and magnetic resonance imaging to chart her progress.

When the leukemia was diagnosed last fall, Amy had just made the travel soccer team, and had to drop out. Last spring she was able to start playing again. But she had to drop out of soccer again this fall because her doctor was concerned that any injuries would be more serious for her than for the average athlete.

"She could swim, but she can't play soccer or tennis," said Amy's mother, Lisa. "That's disappointing, but she's resilient."

Working in Amy's Army has become a virtual full-time job for Lisa Katz. "It certainly changed the course of our lives in a lot of ways.'' She expects that she and her family will stay involved in donor drives beyond Amy's search for a donor.

No member of the Katz family is a match for Amy though her sisters Katie, 9, and Jenny, 14, are perfect matches for each other.

The family's ethnic background is also working against them. The best chance for a donor match is usually within the same ethnic group; Amy's ancestry is Eastern Europeon Jews, a group whose numbers were drastically reduced in the Holocaust.

Diagnosis and mobilization

Shortly after the diagnosis, family and close friends mounted their grass roots campaign.

"We all went to our address books and contacted everyone we knew," Rosenthal said. "Lisa was in charge of recruiting volunteers, and she quickly came up with 152."

People are quick to respond to Lisa Katz, friends say, "because she has always been one of those people who are among the first to reach out to others," said Rosenthal. "The latest example -- on the day of the September flooding, Lisa called me and said we had to help. The next day she was in Washington County with a bucket and shovel, cleaning up a grocery store."

The volunteers harnessed their professional skills to help Amy.

Rosenthal and Mike Katz, Amy's father, are certified public accountants. Lisa Katz's background is marketing and making public presentations. Among all the heavy-hitting volunteers, the names of Jeff and Andrea Fitting are frequently mentioned.

The Mt. Lebanon couple who own The Fitting Group, a Downtown marketing, public relations and communications firm, are family friends and worship at Temple Emanuel where the Katz family does.

"Jeff and I are creative thinkers. The Katz family needed ideas, starting with a name. Jeff came up with Amy's Army. The Army is not really different than a small business. We put our expertise to work -- getting the word out to the media and to the clergy, who put it in their bulletins," Andrea Fitting said. "We did not have a lot of money at that point."

Others are involved in fund-raising. Though Amy has health insurance, it does not cover the $70 needed to process the blood of each person who signs up at the donor drives.

Once the volunteers were recruited, every Army member tapped every group he or she had ever encountered, which has led to drives, for example, at Penn State and in Maryland.

Many of the potential donors have stories to share with the Katz family. One of the more touching stories involves a woman wearing an angel pin. Her child had recently died from a genetic disease."She said there was nothing she or anyone could do for her own child, but here was a family who was trying to do something to help their child and other people's children," Rosenthal said. "We sat down and we all cried. And she donated."

The challenge now is to keep the Army marching forward.

"How do you keep people motivated after a year?" Andrea Fitting asks. "What we are doing goes beyond trying to save a little girl. We all work hard for a living, but rarely do you get overt appreciation. We are all using our skills trying to make the world a better place.''

The group is convinced that a donor match would be found for Amy and already is talking about what we will do after Amy is cured, Fitting said. "We hope to put a game plan together that will help others in this situation. Hopefully those who have the time and energy will train others to do this."

Their efforts, to date, have not gone unnoticed.

Last week Mike and Lisa Katz attended the Second Changes Gala Celebration in Washingon D.C. They were two of only 50 guests invited to be honored for helping the National Marrow Donor Program, which has facilitated 20,000 transplants.