Hey, I’m Sam.
Cincinnati Children’s Hospital May 2010: It was some day of the week and I was lying on a hospital bed in isolation in the Bone Marrow Transplant unit. I had a new medi-port in my chest with an IV that was slowly streaming a heavy-duty immunosuppressant medicine called ATG (anti-thymocyte globulin). I was so weak that I could barely make the short walk to the bathroom and my hands shook so bad that it was hard to eat or drink. Just a few weeks earlier I was playing varsity lacrosse for my high school and had just attended junior prom.
Things changed very quickly during spring break when I started to feel aches and pains in my legs and I developed a nasty fever that wouldn’t go away. I went to the doctor to get tested for mono but the blood work came back revealing strikingly low counts. I started crying when the nurse shared the low numbers with us in that small pediatric doctor’s office in Louisville, KY because I knew what it meant: leukemia. We went to the children’s hospital that night and after 5 days of testing and a bone marrow biopsy, my fears of cancer were squashed and replaced by concerns about a new disease I had never heard of: aplastic anemia.
I remember breathing out in sheer exhaustion and relief when the doctors guaranteed me it wasn’t cancer. But I wasn’t in the clear. I needed a bone marrow transplant. My family and I began to hear words that were never on our radar before but that would become an integral part of all of our lives; words like ‘match,’ ‘transplant,’ ‘transfusions,’ ‘ATG’, ‘cyclosporine.’ My ‘match’ didn’t come. Out of my sister and the 8 million people on the bone marrow registry, it appeared that no one had the same genetic makeup as me. So, there I was, in Cincinnati, receiving 10 days of 8 hours a day transfusions of an alternative treatment that would knock out my immune system so that it could be brought back up over the coming months with transfusions and medicines. Man. I was 17 and bumming out hard.
Cincinnati Children’s Hospital May 2014: Things were a lot different this time, to say the least. My mom, sister, and I sat in the outpatient clinic room smiling, laughing, and telling my doctors about our plans to travel around the country registering bone marrow donors with Sharing America’s Marrow. The nurse took a quick blood draw out of my arm as Alex filmed the procedure for our documentary and slinked down into her chair further, joking about how she was about to pass out. I made a slightly bleak and inappropriately timed comment about how Alex would have never survived if she had been in my place. “Psychologically, she would have never survived,” I said, trying to back track. “She also doesn’t wash her hands enough.” Sorry, Al.
It was a light and enjoyable visit to the new Cancer and Blood Disease Survivor Center at the children’s hospital. We talked about remission and how my search for a match was officially “closed” because I had been healthy for so long. Emotionally, I felt great. Physically, I felt even better. My doctor told me I looked great and sent us on our way. My PA called about 45 minutes later and let me know that my blood counts were some of the highest they had been in 4 years. Thank you God!
All of it was great, except for when we passed a room as we were walking out of the clinic. In the room was a young man about my age with his mom. The light was turned off in the room and the guy was laying on the way-too-short child’s bed rubbing his bald head with his hands, in obvious discomfort. Luckily, he was in the survivor center and he had probably just had a transplant a few months earlier, but it was a reminder that there are thousands out there rubbing their bald heads in dark rooms, waiting to find a match, waiting to have a transplant.
The fact of the matter is: I got very lucky. And I think one of the reasons I’m alive today is so that Alex and I can use what we’ve learned and experienced to get as many people on board with this cause as humanly possible. Because there are so many people who aren’t as lucky as I was and who won’t be as lucky as I was because their only hope for a cure is a bone marrow transplant. I had another chance, and I’m using that chance for them.