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Inspirational Stories

Matt

acute myeloid leukemia (AML)

I’ve lived a mostly normal 26 years on this earth. A life filled with wonderful academics, Division 1 athletics (pole vault), financial internships, and fantastic sales roles at companies I really enjoyed.

However, my life changed drastically on February 28, 2023.

Early in the morning on February 28, at about 3:00 a.m., I was woken up by a call from an unknown number. I let it ring through . . . maybe it was spam? Then they called again.

When I answered, I was met with the voice of a concerned lab tech who explained to me that the blood test I had taken the day before to rule out a possible mononucleosis infection yielded extremely concerning results, an excessively high white blood cell count which suggested an overwhelming infection of some kind. She said I needed to come into the nearest emergency room as soon as possible. That was all I was told.

I called my parents, and they immediately came and picked me up from my apartment to drive me to the Kaiser Emergency Department. Within an hour of arriving, their team had figured out what was going on. I’ll never forget that moment when the ER doctor came in to relay my diagnosis. With tears in her eyes, she said, “We believe you have cancer. acute myeloid leukemia (AML), which is a very aggressive blood cancer. I am so sorry.”

It’s funny when you’re diagnosed with something like cancer, the first thing you think about is not death but your life. You ask yourself if you’ve done all of the things you had dreamed of or if there is anything that you desperately would like to do with the time you have left. In the words of Confucius, “We have two lives, and the second begins when we realize we only have one.” At this moment, I saw my second life, and I was determined to live it.

From that day on, my journey began. I stayed overnight. I had 50 or so tests done. I underwent a bone marrow biopsy. I was told pieces of a developing plan. And in the morning, I was transferred to another Kaiser location where a specialist team was waiting for me. I didn’t go back home until mid-April.

I completed three rounds of intensive, around-the-clock chemotherapy at Kaiser with a 40-day hospital stay following the first round.

Later, I was told that due to a specific mutation of my cancer (a rather unfavorable one), I would need to have a stem cell transplant. It was my only chance for a cure.

People are always wondering if one day there will be a “cure” for cancer. It seems as though scientists have been researching this for decades with no foolproof solution. But what many healthy people don’t realize is that their own stem cells can act as a cure for millions of people affected by blood cancer. In my case, this was most certainly true.

The stem cell portion of my journey was handled by Stanford Hospital in Palo Alto, California. They transitioned me from Kaiser over to their team and began to prep me for more intense chemotherapy, total body radiation, and the transplant itself. The itinerary was impressive, with precise planning of each step down to the exact day/time. But their search for a stem cell donor match uncovered bigger problems. As it turns out, my genetic background is much more complex than I knew. We had always figured that I was mostly Eastern European since I was adopted from Moscow, Russia, at just 18 months old. However, my 23andMe results showed a different story. To my surprise, I have nearly 50% Middle Eastern (Syrian) makeup in my genetics. This is what unfortunately made my chances of finding a perfect 10/10 stem cell HLA match next to impossible. In fact, they didn’t find any viable 9/10’s. The search yielded only one 8/10 match from a young adult in Germany (a country that the U.S. works with quite a bit when it comes to stem cell donations). However, after weeks of attempting to reach this individual to get the donation rolling, they decided to withdraw themself. That was my only viable adult partial match in the world. It was now time to look at my only option left: umbilical cord blood stem cell transplant.

Before this, we had never heard of a cord blood transplant. It seemed radical and dangerous, which my doctor explained to me, it was. But it was my best and only option at this point. And the major upside to a cord blood transplant is that the donated blood is banked and frozen at the moment of the child’s birth, so it’s ready for immediate use in emergent situations. On top of that, you could use mismatched unrelated donors with less strict matching criteria. It really was the next best option for folks who don’t find a regular adult match through the worldwide donor database. Cord blood transplants are rarely performed since they carry some significant risk with them. In the United States alone, between 2016 and 2020, umbilical cord blood only accounted for 2.5% of the roughly 112,000 total reported stem cell transplants. But for folks like me who have no adult match, it can be a wonderful option since cord blood is rich in disease-fighting stem cells, and it is readily available to almost anyone.

My doctor called me to go over my options and relay the risks of this type of transplant. She said there was about a 70-80% chance of cure from this procedure and a 20-30% risk of death from it. This was scary to me since I had never been asked to choose between life and death with these types of odds. But there was no doubt in my mind that I would choose the transplant option. I was ready to face this head-on. And I did.

I completed eight rounds of total body radiation which aimed to eliminate all of my bone marrow to make room for new bone marrow to grow. This was followed by two more rounds of high-dose chemotherapy right before my transplant. Together, these were by far the most physically exhausting and difficult days of my life.

I had hoped that since I was young and otherwise very healthy, chemo and radiation might be a little easier for me. But I would soon learn that this was not the case. The weeks following were brutal ― 24/7 nausea, mouth sores that required IV pain medicine, total body weakness, and a fair share of bone pain which happens as the marrow is being wiped out.

I realized early on that everyone’s journey is different. There is no book or instruction manual that tells you how you might feel or react to certain treatments. The best thing you can do for yourself is hope for the best but prepare for the worst. And eventually, it does get better.

On July 26, 2023, just 10 days after my radiation and final chemotherapy were completed, I received my cord blood transplant. It was my new birthday, so to speak. I felt reborn.

From there I spent 30 more days in the hospital recovering before I was released. I am now about eight months post-transplant, cancer-free, and considerably better.

Sometimes it’s hard for me to look back and comprehend what I went through. It wasn’t just the chemotherapy or the radiation that was the trickiest to deal with. It was also the seemingly endless list of complications I faced along the way. Some of these included deep vein blood clots in my arms from my port catheter, blood infections, appendicitis, pneumonia, cell rejection rashes, fevers, you name it, I had it. But what I learned while facing these upsets is that the path forward is not always straight and that is okay. At certain points in the battle, your only choice is to believe that somehow, someway, these complicated twists and turns are leading me to the end result that I’m looking for, remission. How this works, I have no idea. None of us really do. But believing that it’s all just part of the process is sometimes the best way that we can rationalize why this is happening to us. And eventually, you find yourself sitting on the other side of this mess, scarred but okay nonetheless.

My life still revolves around cancer today but much less. I have bloodwork done every six weeks now just to make sure my immune system is recovering like it should be. I still take about seven to eight pills a day for various preventative measures, but the list of meds has been tapered down significantly. Overall, I’m much better physically but am still reminded of the emotional trauma that this past year put me through. That part of the battle is sometimes the hardest to deal with, but with time, wounds heal. And accepting that life won’t be “normal” again makes things easier. Finding peace in new beginnings is how we are able to finally move on from trauma. I mean, how many times are you able to just start over, let alone with all new fresh perspectives on life? It’s a beautiful thing really.

I share this with the intention of raising awareness, not just for blood cancer, but for stem cell donations as well. I want to stress the importance of joining the bone marrow registry or donating your child’s umbilical cord blood to a public bank. These types of decisions save lives and are some people’s best and only option for a normal life again. People just like me.

To anyone out there facing a similar situation, my advice to you is to hang in there. Be kind to yourself through this process. Surround yourself with love and support and never lose sight of the end goal. Open your heart to others, and let them help you. I know that for me, I didn’t want to be a burden to anyone during this journey, but realized early on, I couldn’t have done it without them. I was once told that having a loving partner, family, or friend by your side during such a battle almost always results in longer survival. And that’s exactly what I had. A partner who never left my side, parents who spent long nights on hospital cots, a sister who trekked an hour each way to make me laugh when she knew I needed a lift, and countless friends who told me how proud they were of me. I really don’t think I’d be where I am today without such an amazing support network.

This is likely the biggest fight of your life, but in the end, you gain wisdom and peace within yourself that you would have likely missed in another life. The undeniable reality is that we all perish eventually. But to have the chance to fight another day, today, that’s something that really is a gift.
 

Young man in black t-shirt with leukemia in a hospital bed with a medical professional standing next to him wearing a mask