One in a Million

There are certain stories that are difficult for me to write about. I sit there on the phone, and I have no clue what to ask. I meet the person, and I small-talk nervously.

This is one of those stories.

It’s the story of a family trying to save a life — for a second time.

I met the matriarch, Dr. Aviva Beiderman, in her office at Cedars-Sinai. I knew about her son-in-law, Jon Galinson, 38, who had been diagnosed 15 months ago with chronic lymphocyctic leukemia, or CCL, a cancer of the blood and bone marrow.

Jon lives in Berkeley with his wife, Yael, and their two young daughters, Gaby, 4, and Luli, 1, and is recovering from his eighth round of chemotherapy, which hasn’t succeeded in eradicating his cancer. His best hope now is a bone marrow transplant — but the chances of two unrelated people having matching bone marrow tissue is about one in a million.

That hasn’t stopped the Beidermans — Aviva, her husband Leon and their daughter Yael — and their friends from doing everything they can to find that match.

Unfortunately, the Beidermans have plenty of experience with “doing everything they can.”

They fought for 10 years to save the life of their only son, Ilan, who passed away from a rare form of bone cancer seven years ago, at the age of 31. Along with their daughter Yael, they went to hospitals and experts around the country. They spent countless nights sleeping in hospital rooms as Ilan underwent numerous treatments and 19 surgeries.

Through it all, Dr. Biederman, a popular pediatrician in the local community, had to manage her thriving practice and care for hundreds of patients.

Now a similar struggle is repeating itself with her son-in-law.

So what do you ask a woman who’s gone through all this?

Thankfully, she made it easy on me. I got a mini-tutorial on different types of bone cancers and treatments and immune systems and DNA matches. But no matter how much we talked about Jon’s cancer and his prognosis, the painful echoes of her son Ilan kept entering the picture.

It was the same thing when I spoke with the daughter, Yael. She went back and forth between talking about her husband and talking about her brother.

She was so close to her brother that she took off her second year at Berkeley to come back to Los Angeles and care for him every day, bringing him to all his medical appointments and keeping him company.

It was Ilan who introduced her to her future husband, Jon, his best friend. And the story gets even more interconnected: Anna, Ilan’s widow and beloved “angel” who has since remarried, is a good friend of Yael.

So when Dr. Beiderman tells me they have a “very close-knit family,” I can see what she means.

In speaking to the mother and the daughter, the thing that got to me the most was their total absence of self-pity. It’s as if they channel their pain and love by focusing on getting more information and answering the same question over and over again: What is the best thing to do now?

Because so much of the medical research is in early stages, the answers often come down to judgment calls. So, the more information they get and the more questions they ask, the better.

The latest question: Will they be able to find a match for Jon for a bone marrow transplant?

Their “search coordinator” at Stanford University has been going through data banks throughout the country and the world. Yael has already arranged two registry drives in her area, which have netted more than 500 samples that they will be testing. A third drive will be held on Sunday, June 28, at Dr. Beiderman’s house in Los Angeles, sponsored by City of Hope and co-hosted by Sara and Dr. David Aftergood.

If you want to help, you can e-mail inquiries to Project.Judah@gmail.com or sign up at join.marrow.org.

Although a Jewish DNA has a higher probability of matching a Jewish DNA, this is by no means a rule. Yael impressed on me that “anybody can save anybody.” She told me of an Indian man saved by a German woman, a Jew saved by a Korean and so on.

She’s now hoping that a “somebody” will have at least nine of the 10 genetic markers required for a match. She heard recently that they found a seven, so she is encouraged.

Dealing with cancer, she says, is “like a full-time job.” But that doesn’t stop her from living. The registry drive she just arranged had so many people that it “felt like a party.”

“When you see our family walking down the street,” she told me, “you’d never know what we’re going through. We have fear and sadness, but we’re always mindful of our blessings.”

Maybe that’s why this story is so difficult to write. The hardships are so loud they seem to overpower the blessings.

But Yael sees blessings everywhere, like in the memories of the many concerts she attended with her brother Ilan, who loved life and music. She even sees blessings in the DNA samples that aren’t a match for her husband Jon.

As she reminded me, “You never know whose life might be saved by that particular match.”

David Suissa, an advertising executive, is founder of OLAM magazine, Meals4Israel.com and Ads4Israel.com. He can be reached at {encode=”dsuissa@olam.org” title=”dsuissa@olam.org”}.

Dear Editor,

David Suissa wrote a moving and thoughtful article about my family and our search for a marrow donor match for my husband in this week’s Jewish Journal. I wanted to let your readers and the wider Jewish community know how they can participate in our drive, even if they are unable to attend the event at the Biederman’s on June 28th. People can register online by going to www.bethematch.com and using the promo code JonGalinson for a reduced (tax-deductible) online registration rate of $25. For more information or to find answers to any questions, they can also call 1-800-MARROW2.
Thank you for your support in this urgent matter and for helping us spreading the word far and wide.

With gratitude,
Yael