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.

The Perfect Stranger: Meeting Wanda's Hematopoietic Stem Cell Transplant (HSCT) Donor

Aaron, Wanda, and me, Newport Beach, 2013

My friend, Wanda had a particularly nasty form of CLL. I say had, because she has been disease free for long time, all because of the kindness of a stranger who is a stranger no more.

But I am getting ahead of myself.

Wanda had had a difficult time with her cancer. Her leukemia had resulted in multiple hospitalizations include at least twice for near death experiences with septic shock, recurrent disabling and painful infections despite heavy duty prophylaxis and an aggressive CLL clonal evolution of the dreaded 17p deletion. And I am leaving out huge chunks of her travails.

Clearly when she looked at her options a few years ago, it was apparent that she couldn't keep going much longer without more therapy, but her fragile immunity couldn't have tolerated the blows from the chemotherapy that she needed.

This has just before our awareness of the promise of the emerging TKIs such as ibrutinib (PCI-32765) and idelalisib (CAL-101) in CLL and at that time, her options were mighty limited.

Wanda bravely elected for an allogeneic stem cell transplant, but wisely chose one where there was no chemo! A transplant and CLL researcher that I knew, Dr. David Miklos at Stanford had an innovative small but growing successful series of outpatient allo-transplants for CLL using only very low dose radiation and high dose ATG (anti -thymic globulins) to briefly knock out the recipient's T cells just long enough to sneak the donor cells into the marrow. No immune suppressing chemo is used, not that all the animal antibody of the days of ATG and radiation to the gut is a risk free or pleasant experience.

Still it was perfect option for Wanda, as her dangerous period of immune suppression would be both of shorter duration and lower intensity.

Steeling her nerves, all in, ready to go for the move up to Palo Alto for the months of therapy and follow-up, her difficult to find perfect 10/10 donor backed out at the very last minute.

Emotionally sucker punched, Wanda's knees may have buckled, but ever the fighter that she is, she just got ready to face what ever would be thrown at her in the next round of her cancer battle.

Enter the perfect stranger. Or at least a nine out of ten donor. A match made in in heaven. Her transplant hopes were rebooted.

More than a year after the HSCT, she found out that this genetic near doppelgänger was a rock solid sweet family man from a small town two hours north of Houston, Texas.

Her transplant path since has had its share of scares and joys, but Wanda is CLL and infection free these days. She is living big and is always ready to be more than generous and thankful for the chances she has been offered.

Earlier this week, it was my great privilege to join Wanda and her family and friends to celebrate her donor and savior, Aaron and his wonderful young family in her backyard.

For those few of us who have had that opportunity to meet and thank the perfect stranger from miles away who's selfless actions have saves our lives, it is one of life's magic moments. We meet someone we probably would never have met. Someone whose whole upbringing and life experiences make have no common points of connection with ours. A path we might never have crossed and a hand we might never have shaken if it wasn't for their random act of kindness that mades us blood brothers.

Knowing that we truly are all in this together can change everything. It makes the world bigger and brighter.

I am still in frequent contact with my Israeli donor, Yaakov and living in gratitude for his painful and selfless efforts to help a stranger. I remember so well the tears of thanks and the tidal wave of emotion when we first met.

The world is a better place because of the work of doctors such as David Miklos (and let me share this celebratory moment with my doctor, Steve Forman, at City of Hope), true heroes such as Aaron (and my donor Yaakov), and survivors such as Wanda.

I am lucky to be able to share in these celebrations.

Yaakov and me meeting in NYC, 2009

My blog started all about my transplant adventure and has subsequently morphed more into my editorials and interviews on blood cancers, and I will write again soon about CLL and other malignancies including the still important role of transplants, but I haven't forgotten my original vision for this blog. Even though my transplant failed, it bought me the time to get to the game changing treatment with ibrutinib that I am enjoying now. If it weren't for Yaakov, my story might have ended years ago.