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Army still on the march hoping to cure Amy
Thursday, September 22, 2005

 
 
How you can help
If you are between 18 and 60 years old, you can help Amy and thousands of others who are searching every day for a donor match. Here's how:

Go to a bone marrow screening at Temple Ohav Shalom on Thompson Run Road in McCandless from 9 a.m. till 3 p.m. Oct. 23 and add your name to the National Marrow Donor Registry. You give only a small blood sample, which will be tested for your tissue type. Blood type does not matter and you might be able to donate, even if you have been rejected as a blood donor in the past. The whole process will take less than 20 minutes.

Contact the Central Blood Bank directly at 1-800-310-9551. When you donate blood, you can register for the national marrow program. When doing paperwork, use Amy's tracking number: Z0020553.

If your blood contains the type of blood stem cells that could help Amy or the more than 4,000 others who search the site each day, it is up to you to decide if you want to continue the process. If you do, here are answers to some frequently asked questions:

It does not cost you, the donor, anything. The collection procedure is paid for by the patient and patient's insurance company.

Doctors are looking for stem cells, which are most plentiful in the bone marrow, hence the name. The blood is collected from a site in the lower back and the outpatient procedure, using a local anesthetic, lasts from 45 to 90 minutes. You can return to work the next day, but you will be slightly sore for a week or two with lower back pain similar to how you would feel if you slipped on ice.

If you would match anyone on the registry and you agreed to proceed, the collection procedure would be done at a local hospital. You do not have to travel; your only out-of-pocket expenses would be your time.

Stem cells regenerate within a few weeks. "You aren't really giving anything away. You are lending something," said Lisa Katz, Amy's mother.

And that could save a life.

For more information contact HLA Registry at 1-800-336-3363 or visit www.communitybloodservices.org or www.marrow.org. If you want to learn more, or sign up for Amy's Army, call 1-877-243-4269 or visit www.amysarmy.org.

   
 

At a time when she should be looking for her first boyfriend, Amy Katz is looking for someone to save her life.

The soon-to-be teenager and her family are searching for a bone marrow donor for Amy, 12, who has leukemia. A transplant is her best hope for a cure.

Amy, an eighth-grader at Jefferson Middle School in Mt. Lebanon, was diagnosed with chronic myelogenous leukemia in autumn 2003, and since that time, she has been in and out of hospitals and must take daily medication. Still, her days are like those of any preteen: homework, music lessons, squabbles with siblings, pestering parents for a cell phone and carrying on the family tradition of cheering on the Mt. Lebanon Blue Devils.

While the family's health insurance covers the cost of most cancer treatments -- father Michael Katz is a financial officer for a Green Tree engineering firm -- it does not pay for the $65 to $100 screenings necessary to find a bone marrow donor. In what Amy's mother, Lisa Katz calls typical of "this amazing place called Pittsburgh," a volunteer group of more than 100 people, calling themselves Amy's Army, has held a series of fund-raisers over past two years to help defray the cost of the testing for a bone marrow match for Amy. Along the way, they have added 6,000 more people to the national registry and 10 patients from across the nation have found life-saving perfect matches.

Still, none for Amy.

This is one in an occasional series of stories that will track Amy's progress and her army's maneuvers. But it is mostly a story about a brave little girl, who in her mom's words is "working hard to grow up."

These days, Amy Katz is as much at home seeing her face on posters around town, which advertise Amy's Army, as she is doing her math homework.

"OK, I really don't like math, either, but it's something you have to deal with," she said matter-of-factly.

This is, after all, a child who stayed calm, cool and collected when she shared a dais with Ben Roethlisberger recently when they were honored at a Breakfast of Champions, sponsored by the Leukemia-Lymphoma Society in Pittsburgh.

"He's nice. He's ... er ... big," she said.

It's a mid-September night, days away from Amy's bat mitzvah at Temple Emanuel next week, and a couple of weeks from her 13th birthday Oct. 5. Both celebrations will be marked with only passing references to Amy's cancer. But you can bet family and friends will show their colors at both celebrations by wearing a bright blue rubbery wrist band with the words, Be a Donor, and the Web site address, www.amysarmy.org.

And you can bet there will not be a dry eye in the house as Amy makes the official transition from child to young woman. There was a time when Lisa and Michael Katz didn't think that was going to happen for their middle daughter.

Amy spent the summer of 2003 enjoying the sugar and spice that often make up the life of a little girl growing up in the suburbs: soccer, swimming and shopping. Sometimes she complained her legs hurt, but her pediatrician wrote it off as "growing pains." When the pain intensified during a late summer vacation to Ocean City, Md., her mother rushed her home for a blood test.

The result was every parent's nightmare. Amy was diagnosed with CML, a form of cancer rare in a child. Since then, she has been fighting it with daily 500-milligram doses of Gleevac, a new form of chemotherapy in a pill. At times, the effect of the treatment isn't pretty, but Amy volunteered to participate in a national study of the drug "because it could help other kids."

For now, Gleevac keeps the beast at bay. Amy attends school and plays trumpet in the band, is still an A student, and generally feels good except for some joint pain and fatigue that has forced her to give up soccer and tennis.

Her curly blond hair is shorter these days because she donated 10 inches to Locks of Love, a group that provides hairpieces to sick children.

But, don't let the perpetual smiles of Amy or any of the Katzes fool you: Amy's only chance for a cure is a stem cell transplant, often called a bone marrow transplant because those cells are found mostly in bone marrow.

As happens in about 70 percent of patients, no family members were a match, even though Amy's sisters, Jenny, 14, and Katie, 10, are a perfect match for each other. There are some 8 million people currently registered throughout the world to be potential donors and none of those match Amy, either. The family was digesting this news when an Army marched in.

"We had to act. The Katzes were always there for others," said Kate Rosenthal, of Mt. Lebanon. "Indeed, she [Lisa] was on the front lines for cleanup detail after last September's floods. The minute it stopped, Lisa was in a Washington County grocery store with a bucket and shovel."

Rosenthal is a family friend who belongs to the same synagogue, has two daughters herself and who helped mobilize Amy's Army.

Now there are about 150 volunteers who work for public awareness and have raised money or gotten grants or corporate partners to help pay for more than 6,000 people to be added to the national registry. To get an idea of how much work has been done, it costs $65 to $100 for each donor test.Another bone marrow screening will be held at Temple Ohav Shalom in McCandless on Oct. 23. "Here's How to Help" in box at right explains how easy it is to get tested.

"Witness the power of an Army," said Lisa Desrochers, recruitment director of the HLA Registry, part of the National Bone Marrow donor program.

"Amy's the face and the story [in Pittsburgh], but this story and the need is repeated everywhere," she said. "This Army is saving lives."

Lisa Katz is a petite blonde with a toothpaste smile of whom Amy is a tintype.

The forty-something exhibits the relentless cheer of a Mt. Lebanon High School football mascot, which is who she was a couple of years ago, and the steely reserve of a marketing executive, which she was until her daughter's illness,

"This effort is not just for Amy. It is for so many others out there just like her," Lisa Katz said. Indeed some 4,000 people with leukemia, aplastic anemia and other blood diseases search the Web site for a donor each day, according to the National Bone Marrow group.

"They, like we, look for hope," Lisa Katz said.

Officially, Amy Katz will talk about Scripture next week when she makes her bat mitzvah, in Judaism, the initiation of a girl into religious responsibility.

But she also will use the pulpit, as she does all the media attention, to "comfort and offer hope to others who have cancer." Clearly, concisely, if shyly, Amy Katz enters womanhood with a life experience no one wants.

"The Army business," she said in the parlance of a 12-year-old, "is not about me. I am only the messenger."

First published on September 22, 2005 at 12:00 am
Virginia Kopas Joe can reached at vkjoe@post-gazette.com or 412.263-1414.
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