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The Gift of Life, Alan's Story
Posted: Nov 28, 2023
The Gift of Life, Alan's Story image

Three years ago, Alan received a life-altering phone call delivering an Acute Myeloid Leukemia diagnosis. Alan navigated the difficult road of finding a bone marrow match. Alan had to rely on his family, friends and strangers' generosity through initiatives like The Gift of Life. His donor gave Alan a chance at life through a spur-of-the-moment decision at a campus event to sign up to be a donor. 

Today, Alan stands not just as an AML survivor but as a warrior, advocating for awareness about blood cancers. His journey embodies the triumph of hope amidst adversity, showcasing the strength found in resilience and the unwavering support of a community. We are so grateful to Alan for the amazing addition he is to our AML community. Alan recently spoke to high school students about his story and the power of signing up to be a bone marrow donor. Continue reading to hear what he had to say to those students. 

Alan is a HealthTree for AML coach. Read more about his story here.
Sign up to be a coach, or to be coached here.

 

The Gift of Life
By: Alan Katz

"Before I begin, I would like to thank Rabbi Green and Ms. Reisel for giving me the opportunity to tell my story. And I would like to thank the student body for volunteering to participate in the Steps for Life Virtual Walk.

What does the gift of life do? Its very simple, they save lives. My story begins 3 years ago with a dreaded phone call from my doctor’s office. The results of my bone marrow biopsy were in and I had Acute Myeloid Leukemia or AML. AML is a fast growing and life threatening cancer of the blood and bone marrow. It was so serious that I needed to get myself to the emergency room right away. The doctors gave me a 50% chance of surviving, but only If I had a bone marrow transplant. 

A bone marrow transplant is a procedure in which stem cells are transplanted from a donor with the same HLA typing as the recipient. HLA are proteins -- or markers -- found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. “You want to find a perfect match.” Siblings who have the same parents are most likely to be an identical HLA match. So they tested my brother and my children. But only 30% of patients with diseases treatable with a bone marrow transplant can find a suitable donor among their family members. Unfortunately nobody in my family was a suitable match. The remaining 70% must rely on the generosity of an unrelated donor to save their lives. 

So how do you find a match? And that is where the gift of life enters the picture. The gift of life is an associate donor registry of the national marrow donor program otherwise known as Be the Match. They hold events all over the country to encourage people to join the registry. And all it takes is a simple cheek swab. 

If someone from your family isn’t a good match. It’s likely that someone from a shared genetic heritage or ethnicity will be a match for you. 

When the gift of life was established 30 years ago, if you were an Ashkenazic Jew and had a blood cancer that required a bone marrow transplant, you only had a 20% chance of finding a match in the registry, which basically meant you probably weren’t going to find a match. But today because of the hard work done by the gift of life you have an 80% chance of finding a match, a second chance at life. 

I would like to take a moment to talk to you about the donors and specifically my donor, Joshua. What Joshua did for me was the ultimate selfless act of chesed. To do that for someone you don’t even know takes a special person.

One of the first things I wanted to find out from Joshua was the story of how he joined the registry. His friend was running the Be the Match event on his college campus to get people tested and signed up for the registry. But Joshua was extremely busy on that day - I think he had a paper due. He didn’t have any time to waste. But his friend told him you have to do it. It will only take a minute of your time. My fate was literally in his hands at that very moment. Every Rosh Hashana and Yom Kippur we read the Unetaneh Tokeph prayer. But who understands what it really means?  Me yichyeh umi yamut - Who will live and who will die? 

I got the opportunity to meet Joshua on my visit to Israel last November. He was living in Herzilyah at the time. I picked a fancy steak house overlooking the Marina to meet. My wife and I got to the restaurant early and eagerly awaited his arrival. I was very nervous. I mean what do you say to the person who saved your life? And how do I even begin to repay this amazing person for what he had done for me. So I told him to order anything he wanted on the menu. And all he ordered was a soup. I think I still owe him something.

It’s the day of my transplant, February 10, 2021. A bone marrow transplant is very different from an organ transplant. There is no surgery. You just lay in your hospital bed and they hook you up to an IV bag filled with the donors bone marrow cells. And when the IV was empty, the transplant nurse unhooked me and said “Mr. Katz happy birthday” And I looked at her and said what are you talking about, my birthday is in April. She said “no Mr. Katz, it’s your rebirth day today. And for the first time in months I smiled and understood what she meant. It was my new birthday and I had just received the most amazing gift. The gift of life, a second chance at living a normal healthy life.

Every good story has lessons to be learned and I would like to teach you two lessons I learned during my battle with cancer. When you hear them you are probably going to think they are pretty simple. But they aren’t. It took me the first 60 years of my life and a horrible disease to fully understand their true meaning.

After I was admitted to the hospital to begin chemotherapy, I immediately became overwhelmed by the treatments that lay ahead for me. It was impossible to see the light at the end of the tunnel. Faced with the daunting task of surviving chemo, I realized I would have to change the way I lived my life. That is when I learned my first lesson. I would need to live my life one day at a time. At first I simply focused on getting through the treatment of the day and not worrying about the next day’s treatment and challenges.  As time went by, I learned to enjoy each and every day of my life and finally today I find myself constantly living in the moment. I have learned to appreciate the smallest things in life like waking up in the morning and enjoying the fresh air. Sometimes the smallest things in life turn out to be the most important things in life.

Before I teach you the second lesson, I need to tell you the rest of my story. Not every story has a fairy tale ending and my story didn’t have one either. Not yet.

The first 100 days post transplant are the most important and many patients struggle. It took me 3 weeks to regain enough strength to be discharged from the hospital. And I landed back in the hospital twice, once due to a virus and a second time due to an infection. The rest of the first 100 days were all the same. In the morning I would drag myself out of bed and my wife would drop me off at the cancer outpatient clinic for my daily treatment,  I would take the elevator up to the seventh floor clinic, open the door to the waiting room and all I would see was a room full of patients, waiting to get their daily treatments and to get the results of their blood tests, hoping not to hear that their cancer had returned.

Day 97 started out just like every other day, except at that appointment I found out my cancer had returned. I had relapsed. That’s when I asked my doctor - What are my chances of surviving? The answer was only 30%. My doctor told me about my new treatment plan which included a second donation from my donor, if he was willing. For a brief moment I thought about quitting, giving up, I had tried my hardest but it just wasn’t meant to be. I took a deep breath and realized the most important lesson in my life. Never give up.

If your battle seems really hard, that’s when you need to fight the hardest, do the things that are hardest to do, each day take the battle further towards the finish line. And that’s exactly what I did. I never gave up.

Thanks to the efforts of my entire medical team, and the amazing care I received from my wife at home and the support of my family and friends, today, not only am I an AML survivor, but I am an AML warrior on a mission to raise awareness about blood cancers and to spread the word about the wonderful things the gift of life does."

The author Mary Arnett

about the author
Mary Arnett

Mary joined HealthTree in 2022. She works as the AML/MDS Community & Education Manager. She is passionate about giving power to patients through knowledge and health education. If she can help one patient feel more confident participating in discussions with their healthcare team and making treatment decisions, she will feel like she has succeeded. When she isn't advocating for MDS patients, she loves being an aunt, attending concerts, and experimenting with new recipes in the kitchen.

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