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Perry Tarquinio

On June 21st of 2012, my wife Kathy and I were getting ready to go celebrate our 7th wedding anniversary in Las Vegas. “Lucky 7” we thought, and had made plans for a weeklong trip while my wife’s parents watched our 4- and 6-year-old boys. I was having a little blood in my stool, so the doctor wanted me to have a precautionary colonoscopy as there was no history of any kind in my family. Later that day, after I had recovered, we were going to start packing the boy’s stuff to make sure they had everything to stay for a week. They were just as excited to stay at their grandparents as we were being able to celebrate with just the two of us.
On June 21st of 2012, my life changed forever. The doctor found a cancerous tumor in my colon that was the size of a softball. It turned out to be stage 4 cancer that had metastasized to my liver and lymph nodes. I was 38 years old. There was no trip to Las Vegas, there was no sleepover for my sons. Instead, what came was years of fighting for my life.
I was in rather good health and pretty young, so the doctors decided to act very aggressively. Chemotherapy was started right away to shrink the tumor and stop the spread. That seemed to work very well and kept the cancer at bay so the surgeries could start. Surgery on my colon, surgeries on my liver, surgeries to put devices in, surgeries to take body parts. I lost track along the way, and honestly cannot remember what I have left anymore.
Since the chemotherapy was working, we connected with specialists from Sloan Kettering in New York City who wanted to try a new but highly effective procedure. Every 2 months we would make the 5-hour drive to and from Manhattan to get tests and chemo treatments. Frequently, I would be admitted to the hospital for one another procedure or another if they didn’t like what they saw on the CT or PET scans. Sometimes an overnight trip would turn into a 4 or 5 day stay with us scrambling to find childcare. We relied heavily on our amazing support system back home picking the boys up from day school, cooking them meals, taking them to and from all their activities. We tried to keep their childhood as normal and as busy as possible so there was less time to think about what I was going through.
This went on for a few years, and the cancer was staying contained with no new growths. We lived our lives two months at a time as we never knew if the next trip would land me in the hospital. We could never commit or make plans as we often had to cancel. Sometimes the chemo knocked me down for weeks and I couldn’t get out of bed. But I stayed positive, put my trust in the team of doctors both in New York City and in Syracuse, and tried to stay as active as possible
The day we dreaded came in October of 2017, when the doctors told us I couldn’t have chemotherapy anymore as my liver was not tolerating it. 5 years of chemo every other week had taken it’s toll, and the cancer was starting to fight back. My eyes and skin began to yellow from jaundice, and nausea and vomiting were a frequent occurrence. Desperate for answers, we looked to another experimental therapy that had shown great results called proton beam radiation. This was a 3 week treatment regimen that zeroed in on the cancerous cells to destroy them. This was only done in New Jersey and cost $10,000 out of pocket. Our friends and family believed in our fight so much, that we were able to raise the money and I started the procedure in December of that year. I was able to be home right before Christmas and celebrate with my family.
On Christmas Day, I was admitted to the hospital with fevers, chills, and vomiting. I stayed there for 2 weeks with the final diagnosis of liver failure. The proton beam therapy, while helping to destroy the cancerous cells, also damaged my liver irreversibly. There was nothing the doctors could do, except treat the symptoms and make me more comfortable. I would go to see my oncologist with the hope of a miracle that the bilirubin levels had somehow gone down and we could start fighting again, but the tests never had good news. I was losing weight, I was losing strength, and I was doing what I could to keep my life going.
In February of 2018, my oncologist in Syracuse asked me if I had ever thought of a liver transplant. Now, when I was diagnosed in 2012, we were told I would never be a candidate for a liver transplant. However, since so much time had passed and science was progressing, there was a study being done at the Cleveland Clinic with cancer patients and liver transplant. Our doctor made a few calls, and got us in for a consultation with the transplant team in Cleveland. Then began our bi-monthly trips to and from Cleveland. Every two weeks I had to have tests done to make sure I was still a candidate and that the cancer had not spread out of the liver. These trips were grueling, as my strength was at an all time low. But I kept holding on for the sake of my family.
At first, we were looking for a live donor for part of the liver. My wife was tested, my family was all tested, even strangers I had never met were reaching out over facebook asking how to get tested. Ultimately the doctors decided that I needed to have a whole liver. For the next few months, it was just waiting. This was by far the worst part of the whole journey, knowing that someone would have to lose their life in order to save mine. Knowing that if that didn’t happen in time, I could lose my life. It was a very dark place for me mentally, and I know it was also hard for my wife and kids.
On May 26th 2018 my life once again was changed forever. We were at a family gathering for Memorial Day surrounded by family and friends. We were also gathering to celebrate our sons’ 10th and 12th birthdays. We had just finished having some birthday cake when my cell phone rang and the caller ID said Cleveland Clinic. When I answered the phone, they told me that unfortunately a family had lost their 30-year old son to his fight with cystic fibrosis and they made the extraordinary choice to donate his healthy organs. We needed to get to Cleveland in 6 hours if we wanted a chance to be a recipient. Our family flew into action, everyone taking on different responsibilities as we dropped everything and left for Cleveland.
My wife and I sped across three states with flickers of hope. We knew there were still many hurdles to cross once we got to Cleveland. I had to have one last scan, and if it showed that the cancer had spread, the procedure was off. They had to be sure that the liver was a match for me, or the procedure was off. If they started the surgery and found something in my body that was not picked up on the scans, the procedure was off. Finally, all of the obstacles were cleared, and I was scheduled for surgery. The surgeon said there was a high probability of this not going well, as I was very sick and my body may not last the 14 hours surgery. Additionally, since I had underwent many previous surgeries there may be too much scar tissue to allow them to proceed. They would not know anything until they got me on the operating table and opened me up. It was the unspoken word that this was my last chance, and it was a slim one. Knowing all of this, I put all my fear behind me and signed the paperwork. I kissed my wife goodbye, told her I loved her, and they wheeled me off to the operating room.
I remember bits and pieces of the next few months. I remember waking up in the ICU not being able to speak with a tube down my throat. There were machines and tubes going everywhere seeming inserted on every accessible place on my body. I remember having to be taken back in for another emergency surgery as I was having in ternal bleeding. I floated in and out of consciousness for a couple of days until they were finally able to take the breathing tube out. I was finally able to leave the ICU and go to an inpatient room at the Cleveland Clinic.
The room I stayed in at the hospital was a floor dedicated to only transplant patients. They were phenomenal and took very good care of me. There were some setbacks along the way. I had a major seizure that caused me to have to have constant surveillance of my brain activity. My body was not responding to one of the drugs they had me on, so a different medication plane had to be made. Day by day I got a little bit stronger. Day by day hope started to come back. Day by day I could see that I may have a future.
I was in the hospital for a month, as they had to monitor me to make sure my body was not rejecting the liver. They had to help me build up my strength and learn to walk again. They had to teach me how to take the very strict regimen of medications I would be on for the rest of my life. When I was finally released, I had to stay in Cleveland for another month with daily check ins. I could not be on my own so my wife, sister, brother and mother all took turns staying with me in a hotel about 30 minutes away. They would drive me to and from appointments and keep my mind occupied and body healing. My sons were able to visit for Father’s Day, and then again on the 4th of July, which happened to be my birthday. As a family, we sat in lawn chairs in a field next to a county fair and watched the fireworks. I could still barely walk, but I remember thinking I was just about the luckiest man on Earth at that moment. I had my family next to me, I was celebrating my 44th birthday – one I never thought I would see – and I could actually begin to imagine a future.
June 21st 2021 marked the three year anniversary of my liver transplant. I have had to go back on chemo a few times as some small cells have shown up in my lungs and intestines. My medications are stable and I am back to work full time. My boys are now 13 and 15, and I am unbelievable grateful that I got to see them turn into young men. My wife is my rock and has been through everything right by my side. We are still living our lives 2 months at a time, but we are able to manage doctor visits here in Syracuse. We know that things can change in an instant. We are living in the present as it hard to look back and scary to look too far ahead.
We are forever grateful to our donor family and the unimaginable sacrifice they had to make in order to save my life. Their generosity not only affected me, but my entire family. My sons still have a father and my wife still has a husband. I am a son, a brother, a nephew, an uncle. I am a friend, a coworker, a teammate, a godfather, a neighbor. All of these lives have been touched by the selfless act of the donation of life and saying thank you is only the beginning. I joined the Finger Lakes Transplant team to help others learn about the options that are out there and spread the word about the importance of organ donation.

Perry Tarquinio
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