Flashback: I meet my Donor in 2009

This page, recently sent to me by a CLL friend  who lives across the country, is from the 2009 Annual Report of Ezer Mizion, a not for profit charity that among other good works, helped me find my bone marrow donor and a new friend in Israel. Ezer Mizion has a huge international bone marrow donor registry. All recruits  of the Israeli Defense Force are screened. in 2009 they found 642 matches and 138 transplants were done around the world.

We raised a lot of money that day in Manhattan. Yaakov and I have stayed in touch. We visited in Israel and my son, Will just met with Yaakov in Jerusalem last month.

I later spoke to the rabbi in Leeds, England that had lead the campaign to raise the money that ended up screening Yaakov and hundreds of others. They failed to find a donor for their congregant in need, but they found my donor. We never know the results of any kind act. We never know whom we might touch when we reach out our hand to give. Or to take.

And even though I never engrafted and it was not the cure that I hoped for, it did buy me enough time to make it to my present life changing clinical trial.

The months before my transplant was like crossing a minefield blindfolded, the months after, like tramping through a quagmire with no sleep, but all that is in the past, and today and the future are bright.

I am grateful for the friends that I have met along the way and especially to the selfless contribution of my blood brother, Yaakov.

As to my comments below, I am happy to report that I have not only met my first two grandchildren, I now plan to live long enough to meet their children.

By the way I got back the rest of my lab and even my IGG level after 6 weeks with no refilling of the tank, was still in the normal range, albeit barely. Looks like the 6 weeks between infusions is about as far as I dare stretch. 

Vitamin D3 level was high normal, just where I want it. I need to take 10,000 a day to get it there. Zinc level wasn't done. Lab error. Not worried.

Here's the article.

YAAKOV MEETS BRIAN

Cancer survivor, Dr. Brian Koffman (56) of California, spoke eloquently at an Ezer Mizion event of his bout with cancer. "It's great to be here," he began. "In fact for me it is great to be anywhere.
“I had been diagnosed with a particularly virulent form of cancer with a short leash and a tight grip. All my knowledge as a medical doctor offered no protection or control over the disease. It was like being on a roller coaster ride without the safety bar. My daughter recently got married. Would I be around to see my grandkids?
"Because of Ezer Mizion's efforts, I am alive. One thing I learned at the school that no one wants to attend: You need the right team. I was stretching out my arm as far as I could and Ezer Mizion reached across the ocean and gripped my fingertips and pulled me to safety."
Unknown to Dr. Koffman, waiting in the audience was Yaakov Fabian (24), the donor whose bone marrow donation had saved his life. An emotional meeting ensued between the two ‘blood brothers' and their spouses, who remained at each other's side for the rest of the evening.
This lifesaving transplant was made possible thanks to the generous sponsorship of the Leeds Jewry Donor Pool at Ezer Mizion’s Registry.

Charity is an obligation

My religion teaches that charity is an obligation, a spiritual act.

I was a minor facilitator in a couple of wonderful charity stories.

Thanks to all you who used my blog and many other sites like it to vote for BE THE MATCH, I am happy to announce:

Jimmie Johnson wins $100,000 Pepsi Refresh grant to benefit Be The Match!

Thanks to you, we won! You votes counted! Jimmie Johnson won the $100,000 Pepsi Refresh grant to fund Be The Match Transplant Grants for Kids! Thanks to all who took time to vote and spread the word. This win for Jimmie is also a win for the kids!

The other story touches closer to home. I just discovered that a fundraiser in Leeds, England lead by Rabbi Daniel Levy and supported by the generosity of his congregants, set up the fund three years ago that found my donor.

The good rabbi and his United Hebrew congregants have done it again. I wrote a short appeal based on my transplant story for last month's fundraiser, not knowing at the time how these folks in Leeds helped give me this second chance at life.

Below is the news coverage. In the next post I will include what I wrote.

REGISTRY GIVEN £50,000 BOOST FROM DINNER

THE Ezer Mizion Bone Marrow Registry has benefited to the tune of £50,000 from a United Hebrew Congregation community initiative.

A gala dinner held at the Queens Hotel, Leeds, attracted some 200 guests.

And two Ezer Mizion donor pools were established in the names of two Leeds women whose lives were devoted to helping others - Audrey Manning and Susan Black.

Rabbi Daniel Levy, chairman of the Ezer Mizion dinner committee, said Audrey and Susan were two outstanding Leeds women who appreciated people and had a great sense of community.

Their deep feeling of responsibility led them to dedicate themselves to others.

He said: "Audrey raised funds for the Ladies Aid Society which eventually amalgamated with the Leeds Jewish Welfare Board. She was a keen member of WIZO and a most active volunteer at Donisthorpe Hall.

"Susan raised funds for orphaned children under the care of Norwood and she was also a committed member of the Chevrah Kaddisha; she was renowned for her warm empathy and comforting of the bereaved."

Three years ago, the United Hebrew Congregation hosted the acclaimed Sacred Voices concert. The event established four donor pools for Ezer Mizion and raised in excess of £30,000.

"Through one of these pools, the Leeds Jewry Donor Pool, Yaakov Fabian, a 22-year-old yeshivah student in Israel, donated his stem cells to an unknown recipient," added Rabbi Levy.

"The next day Dr Brian Koffman in California received them and in November 2009 they had an emotional meeting in New York.

"I am sure that the Black and Manning families will derive some comfort in the fact that other lives will be saved in their loved ones' memories from the establishment of the Audrey Manning Donor Pool and the Susan Black Donor Pool."

The Ezer Mizion Bone Marrow Donor Registry, established in Israel in 1998, is the largest Jewish registry in the world. Because donors and recipients need to be genetically compatible, Jewish patients generally require Jewish stem cell donors.

Rabbi Levy said: "Tonight we hope that those who need a bone marrow registry are able to find an appropriate match. That is why we are here tonight, to celebrate life and to provide hope for the future."

He paid tribute to those who supported the dinner and had a word of praise for the organising committee, Susan Belford, Sarah Doerfler, Ian Freeman, Pam Glynn, Michael Goldstone, Adele Manning and Anne Pliener.

Rabbi Levy later told the Jewish Telegraph: "It was an inspirational evening, full of joy for the lives that have been saved, but also tinged with sadness for those who have sadly passed away.

"The response has been fantastic and I am most grateful to the Leeds community for their overwhelming generosity. We are full of admiration of Ezer Mizion's awesome work."

Other speakers were donor and IDF solider Shmuel Horowtiz and London Ezer Mizion director Simon Maurer.

Entertainment was provided by Canadian-born Israeli Chassidic rock and soul musician Menachem Herman.

Thanks to all you and thank to those good people in England.

California to Leeds to Jerusalem. We never know where our salvation lies.

It is a mitzvah, a commandment to give back.

Thinking Transplant?

The great folks at Be the Match have a pretty new resource.

It is a bit hard to find on their web page, so you can click here to find yourself where you need to be to see if you have potential donors lurking out there

It won't do you much good if you arrive without knowing your HLA typing, and honestly you need to know a little about the whole matching process, but the site has a fine FAQ and holds your hand in understanding what the results do and don't mean.

If your number of potential matches is low or zero, don't panic - there are people being added to the registry every day, and there are other registries. Remember my blessed donor was found through Ezer Mizion halfway across the world.

Most of you, G-d willing will never need this service, but nearly all of you can be on the other side - can have a chance to save a life, to be a donor.

Please get swabbed. Please give if you can.

A man I never met, Alan Cohen died because no donor was found. His sister spoke emotionally about his need and his plight at the same event where I met my donor in Manhattan. The video on the site is from that same emotional night.

Despite bringing in 35,000 more donors, no match was found, and he died before the end of the year. Leukemia can be a cruel master.

I am the lucky one from that night. I am still here, still going. I must make a difference.

John Donne got it right:

Each man's death diminishes me, / For I am involved in mankind

So did Ben Lee:

We are are in this together.

Thanks. Help if you can. You will glad you did.

Family Picture 1 Month Prior to Transplant

This was the gang together for my daughter, Heather's graduation from Columbia law school.

It is rare to catch all the Koffmans in one photo. And none of us with bunny ears or goofy faces.

That trip to New York City was my last air flight for quite a while. My transplant happened about a month after this photo. In retrospect, my cancer was on a fast march then, but was halted in its track by the drastic procedure.

Now it is almost a year and a half later, and I have recovered well enough to make two trips back to Manhattan from SoCal in 9 days, but am sick enough to worry about when and how I will fair with a second transplant.

And I am on edge about the trip and my speech.

Why am I so emotionally broiled for the short keynote address I am giving at the Ezer Mizion fundraiser on the upper east side? I speak regularly in front of hundreds of doctors on topics that are not particularly my specialty and walk away with rave reviews. I even did a comedy routine about leukemia and got some good laughs. This will be a friendly crowd of 50 or so.

I guess I really do know why. These are the people that found my donor. Without these people, without these people....... I don't even want to think about that.

I want to do my best by them. Not just because they are a great non profit organization, which they are, not just because they save lives, which they do, but because of the cold reality that I will need them again to come through for me.

Ezer Mizion Fundraiser

My wife and I will be flying back to frantic Manhattan again where I will give a keynote address, after only about a week at home in pleasant coastal southern California. I am blessed to live where people vacation.

This is no good for me. Fatigue hits me like a sucker punch in the 15th round. The lethargy is thickened by the stress of knowing there is much riding on my prose.

But back I go, because I have a chance to make a difference. A chance to share a shard of my story, and remind those untouched by leukemia or lymphoma, how a transplant can offer some their only path to safety. A chance to move them to help a stranger. like a stranger helped me.

On Monday I will be speak at an upscale fundraiser for Ezer Mizion, the good people who found my beloved donor and gave me only chance to live.

I will tell the truth - about how desperate I was until they helped me and about how desperately I still need them for another swing at the bat, a second transplant.

Don't you think I make a strange poster boy for bone marrow transplants?

But I know that when I arrive at the gathering, my tiredness, will melt like an icicle in a Cuban heat wave.

I will speak with passion and gusto. I will make a difference.