Diagnosed in 2012 at 13 years old

My name is Kielan Wilson Premo. Most of you may remember me as Kielan Lynch however, recently I’ve decided to change my name. I was diagnosed with FHCC in April 2012 when I was 13 years old. Initially I went to the emergency room for what we thought was appendicitis, however, during an ultrasound we learned I had a grapefruit size tumor in my liver. They immediately made arrangements to transport me almost two hours away to Seattle Children’s Hospital. The next day I had an operation to remove about 70% of my liver. As well as the tumor in my liver, they removed a tumor in my gallbladder and surrounding lymph nodes. I remained in the hospital for about a month with many ups and downs, including some additional biopsies of surrounding lymph nodes near my heart. I was sent home with stage one Fibrolamellar Hepatocellular Carcinoma with little to no information, except they believed the doctors had removed it all. I had scans every three months for the first year, and every six months for the second year.

On my two-year anniversary checkup in April 2014 they discovered my cancer was back and had now metastasized. They found a tumor in my abdomen that had begun to attach to my pancreas. I went through another immediate surgery to remove the tumor. After a couple weeks in the hospital, I returned home only to receive a call the next day that my oncology team had missed a tumor in my lungs. Two days later, I returned to the hospital and had lung surgery to remove the tumor. It was supposed to be a small operation with robotic arms doing the work, leaving a small scar. But there was a complication, so they had to open me all the way and remove half of my lung. After a challenging recovery from the lung operation, including my lung collapsing several times, we were told the tumor resection was successful, however, I did not have clean margins for the tumor that was removed in my pancreas. I was then diagnosed with stage four FHCC and it was recommended for me to be watched closely with three month scans.

At my nine-month scan in January 2015, there was a new tumor discovered near my pancreas similar to the previous one. It was close to my spine, kidneys, and against my pancreas. Due to its location and reoccurring in virtually the same place, they brainstormed what to do for a couple months. Doctors and surgeons at Seattle Children’s consulted with Dr. Harris and decided to remove the tumor ASAP paired with intraoperative radiation. Due to the University of Washington being one of the few locations that perform that surgery with radiation, I had to undergo surgery with new surgeons at the University of Washington rather than Seattle Children’s where I had been before. The new tumor was removed along with other lymph nodes, and this time they had clean margins and the radiation during surgery went well. After recovering from that surgery, I returned home and began six weeks of radiation five days a week at the Bellingham Cancer Center.

I am now 23 years old and around seven years with no evidence of disease. I am now the founder of a nonprofit corporation called Youth Buddies, helping other young adults face some challenges that cancer brings. I am extremely grateful and looking forward to being more involved in the cancer community. I have been invited to be a speaker at the National Organization of Rare Diseases summit. I am also a member of multiple state boards regarding mental health. I am adamantly and actively working on building a narrative about holistic care, involving mental health with physical disease like cancer and things of that sort. I am also a member of the Fibrolamellar Cancer Foundation Patient & Caregiver Advisory Board.