Diagnosed in November 2018 at 24 years old; Passed away in February 2022 at age 28

Written by Mark Carles

My name is Mark Carles and I live in Staten Island, NY. I am an avid runner, foodie (but restricted to certain foods since surgery), and media artist. I graduated from Hunter College in the spring of 2017 and went on to pursue my master’s in Integrated Media Arts the following autumn. After a few years of discomfort and misdiagnosis’, I was diagnosed with Fibrolamellar during the fall semester 2018 at 24 years old.

I was at the top of my game–running daily, attending graduate school at night, and two part-time jobs; interning for Dan Rather at Rockefeller Center and archiving almost a hundred years’ worth of performances at The Town Hall in Midtown, Manhattan. I was on a great track towards success when one day I could not take the pain anymore. I was experiencing bloody noses, stomach aches, and acid reflux for a few years, but on October 25th, 2018 I awoke with a sharp pain in my lower right side. I went off to work, complained about the discomfort I was in, and they sent me out early. I had a midterm that night, so I just went to school and sat in a bathroom stall and passed out from the pain for a little while. I went in for my midterm and then had my father pick me up from school and schedule me an appointment at our general practitioner the following morning. The doctor saw me for 30 odd seconds before telling me to stop flexing my stomach. I told him I wasn’t. “We are looking at a tumor.” The next week was spent in a local hospital where I was told I was going to die. It was a tough time after that going to different hospitals looking for doctors that could do something. Many surgeons denied my stage-4 sentence, so I chose the chemotherapy route of the cocktail GemOx.

Two months later I was 20-pounds lighter and told the chemotherapy had failed to arrest the tumor.

In the duration of those two months, my brother had researched and contacted New York Presbyterian’s Dr. Tomoaki Kato for a consultation of my situation. Dr. Kato agreed to do my surgery. There was a chance. On February 27th, 2019 I went under the knife–a 16-hour and 16-pints of O+ blood operation.

I woke up not myself, but I woke up. I was missing 70 percent of my liver, my gallbladder, the head of the pancreas, top of small intestines, and part of the stomach. I got the resection as well as a hell of a whipple. I have not enjoyed food the same ever since.

After a month in the hospital where I celebrated my 25th birthday and gained some strength back, I couldn’t wait to start running again. It took about till June of that year to get up to 3 miles. I get exhausted from the run but I am happy. I also am assistant coaching at a local high school in Staten Island. That is how I have been spending my days…..along with beating runners in perfect health at my local 5K every Saturday!

In the spring of 2020, I started a phase 1 clinical trial at Johns Hopkins Medical Center in Baltimore Maryland. The trial consisted of a peptide vaccine, in combination with Opdivo and Yervoy. I developed a high blood ammonia level, and it was decided that surgery was needed.

In the Summer of 2020, I went under an emergency surgery to debulk my liver of tumors and have my small intestine removed. It was done by the same surgeon, Dr. Kato, but this was after he recovered from Covid-19 and ECMO. When I regained consciousness from this surgery, it had been a couple weeks later and I learnt that I went under cardiac arrest with ECMO and also, a 6-day medically induced coma. I am not supposed to be alive right now. Another year of Covid restrictions and it’s been a whole year since that surgery–I still am not recovered from my ECMO experience, and I don’t think I ever will be. It is hard to run, let alone walk, and the nerve damage I sustained is so great that I am still undergoing physical therapy. But I Keep on Tuckin’ because at the end of the day, that’s all we can do.

In early 2021 I continued to undergo treatment at Johns Hopkins for pain management and experimental chemotherapy. I tried 5 FU for one cycle but I could not tolerate it. I received radiation treatments at NY Presbyterian to address a tumor which was pressing on my spine.

Written by David Carles

In October Mark was admitted to the ICU at NY Presbyterian where he was in a coma, brought on by high ammonia. He received dialysis and blood transfusions. Again, in January 2022 Mark was treated in the ICU. He was discharged to hospice at home, where he was surrounded by family when he left us on February 24, 2022.