Searching for a Match

Posted

by Michael Orbach

Issue of May 28, 2010/ 15 Sivan 5770

By Michael Orbach

An unprecedented effort is under way in the Five Towns, in Riverdale, N.Y., and in Brookline, Mass., to find bone marrow matches for four young people fighting leukemia.

In Woodmere, Zach Englander, a 20- year-old Yeshiva University student, was diagnosed six weeks ago with the form of cancer that attacks the blood. Over Pesach, Matt Fenster, a father of four in Riverdale, was found to have an acute version of the disease.

“Overnight, we went from the normal family down the block whose biggest concern was getting all the kids dressed, fed, and into the car in time for school to a family fighting this potentially fatal disease,” Fenster wrote in a letter to family and friends. Efforts are also under way to help a pregnant young mother in North Woodmere, and Sarah, a 9-year-old in Brookline.

In each community, friends and family of the patients have organized bone marrow testing drives and fundraising efforts to pay for the tests. Bone marrow comprises the stem cells found inside large bones that produce the components of blood — red, white and platelet cells. Transplants are an effective means of treatment.

“What they try to do is treat the cancer with chemotherapy to induce a remission but unfortunately in a lot of cases the remission is temporary and doesn’t offer a cure,” said Jay Feinberg, executive director of the Gift of Life, a bone marrow registry. “In many cases the long term cure is a bone marrow transplant... You’re replacing part of the immune system that is responsible for manufacturing the cells.”

Feinberg founded the organization after undergoing a successful bone marrow transplant. He was diagnosed with leukemia in 1991 when he was 22. His donor was a Jewish girl from Milwaukee — the last person to be tested after a four-year marathon of bone marrow drives across the country.

Finding a perfect match is daunting both financially and medically.

A cheek swab costs $54 to process. Finding a perfect match, according to Dr. Ruthee -Lu Bayer, director of Adult Hematopoietic Stem Cell Program at North Shore University Hospital, is like “trying to find a needle in a haystack.” As the largest donor facility on Long Island, she said, they perform an average of 70 transplants per year.

Organizers hope that given the insular nature of the Jewish community, a perfect match will be found for all four patients.

Over two-dozen perfect matches were discovered after a round of bone marrow drives held several years ago for Barry Mishkin. Mishkin’s brother-in-law, Jonathan Nierenberg, oversaw that effort in 2000 and is working to organize the drives in the Five Towns. Mishkin unfortunately did not find a match and died in 2002.

“In his memory we have approximately 27 perfect matches directly related to that drive,” Nierenberg explained. In Zach Englander’s case there is additional cause for hope, Nierenberg said, since Englander is a Kohain, a member of Judaism’s priestly caste.

“It hasn’t been proven that all kohanim are all related, though we know they come from Moshe and Aaron,” Nierenberg explained, referring to research that found strong patterns of related lineage among that group. “We have been reaching out to kohanim.”

He and others are running the “Cheeks and Checks” campaign to get people tested and pay for the processing. Enough money has been raised so far to cover the costs of processing 6,542 test kits from previous drives that were in storage due to lack of funding.

One of the perfect matches from a drive held in 2002 was Adam Lish, an ophthalmologist who is also working on Zach Englander’s drive. Late on a Friday afternoon a year after his cheek was swabbed he received a phone call to inform him that he was a match for an adolescent boy suffering from a rare form of the blood disease histiocytosis. He broke the news to his family over Shabbat.

“I felt almost a personal connection, my kids were about that age,” Lish explained.

Over the next few weeks, Lish underwent a series of blood tests and within a month he was cleared for the procedure. The procedure took place over the Memorial Day weekend seven years ago. By Tuesday, Lish recalled, he was back at work. Now, every year at the Gift of Life dinner, Lish sees the transplant recipient.

“We view the child as a distant extension [of our family],” Lish explained. “Now he’s a healthy fifteen-year-old high school kid.”

So far, ‘Match 4 Matt,’ the Riverdale-based effort that organized the twin bone marrow drives at the Salute to Israel Parade and at the Concert for Israel in Central Park, has tested over 2500 people and raised close to $100,000 to pay for the tests.

Stephanie Minkove, one of the drive’s organizers, called the response “absolutely amazing.”

“People have been wanting to help, from play dates to meals,” Minkove said. “We used the website ‘Take them a meal’ to coordinate meals and it was full within an hour.”

She praised Temple Emanuel-El in Manhattan and the organizers of the Salute to Israel Parade, and the concert that followed, for helping support the effort.

“Matt and Jen feel amazingly supported,” Minkove said.

When Riverdale held a bone marrow drive recently, an aunt and uncle of Sarah, the nine-year-old from Boston, held their own drive in Manhattan. Each publicized the other’s drive.

“Friends of Zach’s were handing out flyers wearing ‘Match-4-Matt’ t-shirts at the Salute to Israel parade,” Minkove explained. “We’re all in together, there’s no competition. It was a really beautiful thing.”

Steve Matthews, one of the organizers for ‘Match-4-Matt’ said drives were planned all over New York as well as in New Jersey and Florida. A drive for Matt was also held in Jerusalem.

Bone marrow donors and recipients need not be of the same blood type. What pairs require are the same antigens so that the white blood cells won’t attack one another. A bone marrow transplant can actually change the blood type of the recipient.

“I was an A- and my donor was a B+,” explained Feinberg. “I converted to B+.”

To be tested, cells from inside the cheek undergo Human Leucocyte Antigen typing. Dr. Bayer said that there are currently two ways of performing a transplant. The first, called a Bone Marrow Transplant or Surgical Harvesting of Bone Marrow, entails using a specialized needle to remove bone marrow cells from the donor that are then infused into the recipient. In the second method, known as Peripheral Blood Stem Cell Transplant, the donor receives a drug called Neupogen for several days prior to collecting stem cells peripherally while connected to an apheresis machine that is able to separate the stem cell from the donor’s blood. Once collected, it is infused into the patient within a day or two.

60 percent of bone marrow transplants are done through the latter method, Bayer said. The other 40 percent are done by surgical harvesting.

Usually, Bayer explained, bone marrow transplants are performed between siblings since there are higher percentages of them being a perfect match. If there are no siblings or the siblings do not match, then a search through the registry is made. If a perfect match is not found in the registry then an imperfect match from a sibling, parent, or cord blood is considered. Success rates for transplants, she said, are between 40-50 percent.

Testing will take place at Yeshiva Sh’or Yoshuv (1 Cedarlawn Avenue, Lawrence) and at HAFTR High School (635 Central Avenue, Cedarhurst) on Sunday, May 30th between 9-5. Eligible donors must be between the ages of 18-60 and in general good health. If you have been tested after 2001, you do not need to be retested.

[Editor’s note: At the HAFTR High School testing site the Jewish Star will host a live internet radio broadcast between 9-11 a.m. heard on nachumsegal.com]