When “Thank you” Feels Small

By | October 24, 2017

Have you saved a stranger’s life?  Been that one person at the right time?  Without YOU the stranger’s existence becomes a memory?  I wonder what that feels like.

I am the stranger whose life was saved by the actions of a young man across the ocean.

Four and a half years ago, my bone marrow went on strike (too much overtime from Polycythemia Vera).  I was in the fast lane en route to my mortal end.  Only an allogeneic hematopoietic (blood) stem cell transplant could save me.  Among my four siblings, my match was not to be. Like 70% of blood cancer patients who need a donor transplant, my fate depended on finding a match among all the marrow donor registries on the planet.

Finding someone who joined a donor registry with matching HLAs is just the first step.  That potential donor must be contacted, agree to undergo the stem cell collection process, and clear several health tests. The preparation regimen to increase the number of stem cells in the bloodstream requires a week of daily injections. At each step, the potential donor may change his decision.  Even at the point of collecting the stem cells, he (or she) may back out.   Unfortunately, some do back out.  This is a REAL donation. The donor is not paid.  And there is no charitable deduction to adjust their taxes.

By participating in the process, a marrow/stem cell donor must affirm the decision several times.

When I received word that a “10/10 match” was found, I was told only that the donor was a 22 year old male from another country. Through some deductive reasoning, we figured out that he lives in Germany.  My kids called him Wolfgang (“Wolfy”). We all cheered on Wolfy’s strong and determined stem cells.

One year after transplant, we were allowed to exchange letters without sharing identifying information.  He learned that I am a mom with two kids who are just a few years younger than him. He learned that we are all so grateful that he gave of himself to give me a chance.  Two years after my transplant, with consent, our respective registries released our personal contact information.  To respect his privacy, I’ll call him Chris.

Chris and I became Facebook friends. He now has more American Facebook friends than he bargained for. We exchange general pleasantries periodically. Notwithstanding songs from The Sound of Music, I speak no German. Chris does not speak much English.  We experience the limitations of online translator sites frequently.  Pronouns and modifiers are often incorrect, leading to confusion and misunderstandings.  It’s been fun.

Coming Soon:  The Big Reveal

Next week we have the opportunity to meet in person. In Germany.  I will be in Frankfurt au Main for a 3-day MPN Horizons International Conference for MPN advocates.  I’m honored to attend as a guest speaker and patient advocate.  My husband Robert will join me Sunday. We will drive to Berlin to meet this most incredible human. Yes, I will have tissues and waterproof mascara.

Since Chris agreed to meet me, my mind is in a whirl. My intention is to give him a big hug. And hopefully learn a bit more about him.  Since I have the blood and immune system of a healthy twenty-something man, Chris is forever a part of me.  All the way to the bone.  Does he have any allergies?  Does he like spicy food (my palate has tamed, but it may be due to the chemo)?  What are his interests?  How has this incredible act of generosity impacted his life?

Two days later, I will travel to Birkenfeld to meet the staff of Stefan-Morsch-Stiftung, the marrow donor registry that found my life saver.  The people who operate these registries around the world get up every day with children, youth, and adults who will not survive without their special match.  I want to do my bit to remind them how precious their work is to patients with blood diseases, their families, and their communities. Thousands of people die each year because no matching donor is found. My life is proof that holding all those swab drives and educating the public is meaningful beyond numbers and statistics.  I will have more tissues and waterproof mascara.

Stay tuned!

Leave a Reply