Sophia

Diagnosed in September 2021 at 18 years old; passed away in November 2022

My story began September 7th, 2021. I was at school, having a typical day of classes at Georgia State University. It was a very dry, hot day and I was struggling a little walking from class to class in the heat of the afternoon. I had just finished class and decided to stop at the bathroom for a quick pit stop and rest from the heat. As I entered the stall, I felt my chest get tight, and pain entered along with it. Never having experienced any health issues, I thought I must have simply been winded by the several flights of stairs I had just gone down. I sat down in the stall, but the pain only increased. I left the stall, washed my hands, and entered a seating area that was located right outside the bathrooms. I sat down to see if the pain would go away on its own. I waited about 5 minutes, but the pain persisted. I had an uneasy feeling in my stomach; I suspected something wasn’t right here. I decided to call 911 and be better safe than sorry. After calling them I called my dad who would be picking me up and let him know what was going on. 

The campus paramedics rushed to me and ran some tests to try and figure out what was going on with me. They couldn’t figure out what, but they knew something was wrong. They called the ambulance, and I was rushed to the emergency room. There, cardiologists investigated what was going on. They felt a mass in my abdomen but brushed it off momentarily to find out what was causing this strong, intense pain. Finally, they discovered that I was enduring a heart attack. I was rushed to a room where they had the necessary equipment to remove the blood clot out of my artery; I felt immediate relief. They transferred me to a room in the ICU; here is where the doctors announced to us that the mass, they had found earlier was liver cancer, a rare kind called fibrolamellar carcinoma. We were all in shock and disbelief.

I ended up staying in the hospital for about 2 weeks. By the end of my stay, my family and I had had some time to process the whole situation, but it was still unbelievable to us. This was especially true because I had been exceptionally healthy all my life. The more my family learned and did research, the more we became familiar with the traits of this cancer. Through this research, we found experienced doctors including Dr. Kent, Dr. Kato, Dr. Humar, and an experienced parent/patient advocate named Tom Stockwell.  We started my care at Emory but later transferred to Children’s Healthcare of Atlanta. We have met marvelous staff dedicated to caring for me and making us all feel welcome and comfortable. This past September was a year that we have been on this journey to recovery; we’ve been through so much and met so many kind people dedicated to ending this horrible cancer. We are so grateful and hope to keep making these important connections throughout our road through fibrolamellar.