Written by Sarah Pine, fibro fighter. She is currently a journalism student at University of Pittsburgh, and wrote this piece for a class assignment.

I.           Preface  

I was diagnosed with Fibrolamellar Hepatocellular Carcinoma, a rare liver cancer occurring in 1 in 5 million people, in July of 2023, but at that point the cancer was already gone. As confusing as it sounds, I only found out that the tumor covering my liver was in fact cancer after it had been cut out of me.  

My journey started with confusion. A sudden itch took over my body and wouldn’t let up. I scratched away at my skin until I bled. I noticed the whites of my eyes gleaming a soft yellow. I knew there was something wrong, and it was impossible to ignore. Prompt doctors’ visits revealed a mass in my liver. The tumor was small, about the size of a Rubik’s Cube, and it was pushing against my bile ducts. This gave me the early symptoms that lead to my prompt diagnosis. FLC isn’t typically caught at six centimeters. Like many cancers, it grows and ravages the body silently until it’s too late. But not my tumor. It grew in just the right way. When I think of my personal story, I think of luck— luck that makes me feel unworthy of being a cancer survivor, and there are a million ways that I could tell my story, but none of them are complete without telling Robert’s.  

I first heard about Robert through his father, Tom. My mom’s panic at hearing my diagnosis of cancer led her to FibroFighters Foundation, a nonprofit that helps FLC patients find doctors and resources to fight the rare cancer. Robert’s story guides Tom and the foundation to help patients like me, and although Robert began to tell his own story, his autobiography was cut short after his passing in March of 2017.  

II.         Life Will Disappoint You 

Robert Stockwell was like every other eighteen-year-old. He excelled academically and took particular joy in IT work. He was his high school’s IT director, where he worked in sound rooms, school productions, and football games. Life couldn’t have been better. Apart from some issues with acid reflux that had appeared when he was a pre-teen, Robert was the picture of health. His life was just too perfect, until he experienced symptoms of a flu bug that wouldn’t subside.  Eventually, the symptoms became severe enough to warrant doctors’ visits. At this point. Robert’s stomach was distended enough to make him appear four months pregnant. 

        Amongst all of the chaos of his unknown illness, Robert was still giddy. He recently acquired his own American Express card and was eager to treat Tom to a nice meal. They enjoyed mac and cheese— Robert’s favorite food, even at eighteen. They talked and laughed and smiled; neither of them could have anticipated what was to come that evening. Robert had an ultrasound early in the afternoon, and although his distended belly and flu-like symptoms were concerning, they did not expect the impending diagnosis. During that dinner, they received a call from the radiologist, telling them to immediately go to a larger medical center for further evaluation.  

        The tumor was huge, twenty- six centimeters at the time. It was attached to his liver and crept towards his heart. An MRI and work-up revealed that Robert’s resting heart rate sat steady at 140 beats per minute. Even if he was completely still, his heart raced rapidly, beating over twice the normal amount. Robert’s heart was afraid, it knew before he did that cancer cells were multiplying into his vital organs and bloodstream. Part of the tumor had broken off into his Inferior Vena Cava and grew further into the right atrium of his heart. Livers can be resected and transplanted with relative ease compared to other organs. Humans can live with just one-third of their liver, and the cut portion grows back just as healthy and strong as the original organ. Livers can be transplanted from living donors who are willing to sacrifice half of their liver to save someone’s life. Hearts weren’t so easy. 

        On January 13th, 2014, Robert was officially diagnosed with Fibrolamellar Hepatocellular Carcinoma. In that moment, no one in the Stockwell family could rise from their chair. The hour in that hospital room felt like days; time dwindled on and on, but no one could stand or speak. During the two-and-a-half-hour drive home, you could hear a pin drop. Their minds raced but their mouths remained shut. Tom’s mind swirled. From that moment on, Tom knew that he had to do everything he could for Robert— it was his son; of course, he would jump every hurdle and cross every bridge to save him. 

Tom recounted this over Zoom. His face remained strong; his voice unchanged. This wasn’t the first time that he’d recounted Robert’s story in full detail, and it wouldn’t be the last. I faced him from a screen, and felt my body go numb as I realized that I was here, and Robert wasn’t. It wasn’t the first time that I realized the reality of disease, and it wouldn’t be the last.  

When I first met Tom, it was also from a screen. My family met with him and FibroFighters medical director pediatric oncologist Dr. Paul Kent, over Zoom to discuss my case. I sat in my bedroom, separate from my parents, who shared a screen downstairs. I couldn’t be in the room with them. I didn’t want them to see me upset, and something about their worried faces gave me a sense of dread that was impossible to shake off. I don’t remember much of that meeting. Words blended together and faces blurred; it was the first time I really realized my position. I had cancer. There is only one clear moment I can think back to from that meeting. After mentioning that I was from Savannah, Tom and Dr. Kent lit up. They recalled a patient from the Savannah area, Tara, who worked with them a couple years back. They raved about how wonderful she was with unwavering smiles across their faces. My mom asked if she could have Tara’s contact information. Tom’s face downturned. She passed away, actually. The words rang through my ears and orbited around my mind.  

III.       Nothing Can Prepare You For Shock 

        Robert’s doctors said there was no hope. Robert had six to eight weeks to receive all the palliative and loving care that he could, and then he would be gone. As a parent, Tom refused to accept this. Since Tom’s wife Carrie worked for a large biotech firm, they were able to connect with field specialists around the country. When diagnosed with such a rare and complicated disease, you have to know people to get the best care possible. That’s how you connect with doctors who care enough to give you a chance. That’s what Tom fights to change through FibroFighters. Robert’s family connected with a doctor in Los Angeles who was the chief of surgery at UCLA health. Dr. Busuttil promised to help Robert. He created a surgical plan and consulted with other specialists to save young Robert’s life. But they didn’t know that Robert’s brain was starting to deteriorate before their eyes. 

        Hepatic Encephalopathy. It stems from liver dysfunction resulting in the accumulation of ammonia, which causes swelling of the brain. Without knowing this, Robert and his family drove the 100 miles home from Los Angeles. At first everything appeared to be normal, but partway into the drive, Robert started acting out. He didn’t know where he was, and he was ravenously hungry. He attempted to jump out of the car as it sped down the highway. He was forced and restrained to his seat until they stopped to eat. Robert gave Tom and his mom Carrie a big hug. He knew that things weren’t right, and all he could think to do was hug his parents.  

        That night, Robert’s strange behavior continued. He tried to jump out of his second-floor window, he threw up on his laptop thinking it was a bucket, and he strolled through their house naked. Tom promptly drove Robert back to UCLA where he was placed into a medically induced coma. With his brain swelling as much as it was, Robert’s doctors didn’t think that he’d make it.  

        Despite all odds, Robert survived dialysis and two days later, received a life-saving liver transplant. The surgery lasted twelve hours; Robert received a new liver and underwent open heart surgery. After surgery, Robert slowly woke up, loopy from immunosuppressive drugs. 

“Daddy?” Robert croaked. 

        “Yeah,” Tom’s eyes widened. 

        “What happened?” Robert looked around in disbelief. He was alive. 

        “Buddy, your tumor is gone.” 

        Robert looked down at his stomach and pressed his hands down to feel the flat surface. His eyes welled up with tears, and he realized.  

“It’s gone.” He paused. “That’s impossible.”  

IV.      Disparity Precedes Prosperity 

        Robert’s tumor was gone, but his cancer journey was not over. He still had years of treatment ahead of him. Recurrence rates for FLC are high. The recurrence rate following surgical resection, which both Robert and I had undergone, is over 85% when there is large tumor size and advanced stage presentation. Robert’s tumor was large in size, and in the most advanced stage of presentation. Mine wasn’t.  

When I was given the official diagnosis of FLC, I didn’t cry. I couldn’t cry. I couldn’t cry because the cancer was gone, and I would probably be okay. I couldn’t cry because my mom was sitting across from me, on the verge of tears. My fear and grief would inspire hers. I was now a burden. A cancerous burden. My mom told me that I couldn’t talk about my diagnosis in front of my grandmother. She would have a heart attack. I couldn’t voice my fear or frustration to her because she was old, and the grief could kill her. 

        I texted my friends the news. The news was surprising considering I already told them that my tumor was benign, but the pathology told a different story. They sent their condolences and their relief that I was now cancer free. I went into my room and cried. I held back tears when my surgeon called me and reiterated the news. He told me not to google it. Google represents a generalization of all FLC cases, and yours is different. Google told me that I would likely die in 3-5 years. But I wasn’t dying. I was lucky. Lucky to be alive, lucky to have caught the cancer early. 

V.        Everything Happens For A Reason 

Robert wasn’t lucky. Even though he underwent life-saving surgery, he wasn’t out of the woods. He still had metastases on his lungs and had to do chemotherapy. This would mean that Robert would live in a constant back and forth from home to UCLA. Any vestige of a normal life was taken away from him, and his life was now the life of a cancer patient. Despite this, Robert had a second wind. He saw an end to his journey, where he would beat cancer and win his life back. He decided to get back to work. He started his own business with computers and website development— RHS Tech. Although the business didn’t really take off, it still offered Robert an escape from the complexities and realities of cancer treatment. 

        Like most cancer patients, Robert wanted to move forward. Everyone from his normal, pre-cancer life moved forward without him. They went off to college and began their adult lives. They didn’t know what to say to Robert after his diagnosis, so they deserted him. They went on in their lives, leaving their sick friend behind. Not because they were bad people, but because they were young. They hadn’t experienced the loss or fear that Robert had, and they didn’t know how to talk to him. Robert was isolated. Lonely, scared, and isolated. Robert could have fallen into a pit of isolation and depression, and he certainly had those moments, but he chose to help people. This wasn’t a sudden revelation or a new-found life purpose that cancer gave him; however, cancer did give him a vehicle and means to help people. On his frequent visits to UCLA health, Robert made an effort to meet all the young patients on the transplant floor. Some of them had issues with drug abuse or other problems that caused them to lose their liver or need transplants, and Robert wanted to talk to them. He was frank with them; he told them that he had cancer and gave them hope and new perspectives. He did this for over a year and a half after receiving his chemo treatment. He was also active on Facebook pages for FLC patients, giving advice and sharing his experience with others. He truly was an inspiration. He had to be. He had cancer, and he had to make something of it.  

VI.      Life’s Sharp Curves Are Invisible 

        Cancer doesn’t care about how good of a person you are. For Robert, and every other cancer patient, it is bittersweet. Robert would take one step forward and two steps back. He underwent multiple procedures to address metastases, and eventually, one morning, he didn’t feel well. He was talking to people about a website and a project through his old high school, and he was nervous. He began vomiting, and blood poured from his nostril. At first, he attributed it to his nerves, and didn’t think a whole lot of it, but it wouldn’t stop. His family called the paramedics, and Robert was taken to the hospital. His doctors found a six-centimeter tumor in the center of his head, and another tumor along cheekbone. This made it difficult for him to open his mouth and chew. At the same time, the cancer metastasized to his bones and his spine. Just a few years after his initial diagnosis of FLC, his body was overtaken by cancer. 

VII.  It’s Always Darkest Before The Dawn 

Robert officiated his sister’s wedding. Through his pain and frequent appointments, Robert got certified as a wedding officiant to gift his sister everything he could. No one would have known that Robert had cancer. Nobody would have known that he had been throwing up hours before the ceremony, and that he was too sick to tie his own tie. Instead of letting himself be sick and taking pity for himself, he stood up in front of his friends and family and became the best wedding officiator that anyone had seen. You would have sworn that he had been doing this for the last thirty years. He was a natural and gave all the energy he had to the ceremony. The whole day was full of celebration. Not one moment focused on Robert’s sickness or how strong he was. It was just about celebration. Recalling this moment put a smile on Tom’s face. He pointed me towards the FibroFighters website, where I could view a picture of him from that day. Tom was right. I would have never known that the young man in that picture was sick. Robert’s smile radiated a contentment that could not be mistaken. Tom marveled at the picture himself, and for the first time during our interview, I was able to genuinely smile with him.  

Robert officiated his sister’s wedding in September of 2016, and he passed away in March of the following year. After three years of relentless battle, Robert succumbed to his illness. Before he passed away, Robert told his father to keep helping people. Tom knew that Robert’s death wouldn’t end his preoccupation with cancer. Cancer would live with him and his family for the rest of their lives, so Tom followed Robert’s orders. By June of 2017, Tom was working towards the larger goal. Tom looked at the online landscape surrounding FLC and realized that there was no resource for patients to receive help through diagnosis and treatment. Tom began consulting with another FLC foundation focused on research but realized that many of his goals didn’t align with theirs. Tom wanted to help the patients themselves, so he created the FibroFighters Foundation. As it stands now, FibroFighters helps FLC patients around the world, guiding them through diagnosis and treatment, all in Robert’s honor. 

Robert’s story isn’t about his kindness and compassion or the legacy that he left behind. Robert’s story is about the end of it. Cancer is a horrific, unfair disease. A disease that took the life of a young man with his entire life ahead of him. A disease that will haunt his family for the rest of their lives. Robert’s death compelled his father to dedicate his life to helping others in Robert’s position. Cancer wasn’t the blessing that led Tom to his true path, it was the tragedy that led him to uproot his life and support others like Robert. Others like me. Tom and his team informed me of my treatment decisions and answered all of my questions, and a lot more of my parents’ questions. Without Tom and FibroFighters, I don’t know where I’d be. Tom does what he does for Robert, because of Robert. I am where I am because of Robert.