Title: Small & Gutsy Features Blue Faery: The Adrienne Wilson Liver Cancer Association At twenty-two, Andrea Wilson Woods took custody of her eight-year-old sister. At twenty-eight, she came home from teaching and found that sister — fifteen, straight-A, thriving — curled on the floor saying she couldn't breathe. Six hours later, a doctor said the words: tumors in her liver and lungs. Adrienne lived 147 days. Host Dr. Laura Scherck Wittcoff talks with Andrea about the years before the diagnosis and the twenty-four years since: a rejection that accidentally founded an organization, a medical dictionary bought because no patient materials existed, and the public health message Adrienne herself wanted people to hear. It is a conversation about grief that doesn't resolve, about what it costs to run an organization whose patients almost always die, and about the difference between justifying a loss and learning how to carry it. A note for listeners: this episode includes frank discussion of a child's death, parental addiction, and the guest's own experience of suicidal thinking in the year after her sister died. Guest Andrea Wilson Woods, Founder and CEO, Blue Faery: The Adrienne Wilson Liver Cancer Association Andrea was twenty-two, newly graduated from USC and living in Los Angeles without financial stability, when her mother called the day after Christmas and said she no longer wanted to be a mother. Her sister Adrienne, eight years old, had arrived for what was supposed to be a two-week visit. Andrea told her mother that if she took Adrienne then, she would not be giving her back — and later went to court and won full legal custody. She raised Adrienne through her entire twenties, working four part-time jobs at one point and eventually becoming a teacher largely so she could be on her sister's schedule. Adrienne was diagnosed with stage four hepatocellular carcinoma on May 16, 2001, and died 147 days later at fifteen. Andrea founded Blue Faery in Adrienne's memory, is co-author of multiple academic articles on HCC, launched the podcast Better Off Bald in 2017, and published the medical memoir Better Off Bald: A Life in 147 Days in October 2019 — a number one Amazon bestseller in multiple categories and the winner of several awards. What is Blue Faery? Blue Faery: The Adrienne Wilson Liver Cancer Association is dedicated to preventing, treating, and ultimately curing primary liver cancer — specifically hepatocellular carcinoma, or HCC. When Andrea went looking in 2002, not a single organization in the country was working on it. The name comes from Adrienne, who loved Ireland and fairies and preferred the older spelling, faery; the logo is modeled on a picture of her face. Three pillars from the start: research, education, and advocacy. Research. The Blue Faery Award for Excellence in Liver Cancer Research, launched in 2009, funds investigators working on HCC. Education. Patient resource guides distributed through oncology centers, physicians, and nurse navigators — more than 115,000 copies in under five years, in English, Spanish, and Chinese. Community. A moderated, HIPAA-compliant patient and caregiver forum — deliberately not a Facebook group, for reasons Andrea states plainly in the interview. Structure. Five full-time employees including Andrea, plus volunteers, vendors, a board of directors, and a medical advisory board. The team is entirely remote and distributed, which Andrea credits for both talent access and low overhead. Funding. No government money. Revenue comes primarily from corporate grants and sponsorships, with diversification as an active goal. Key Topics Covered The afternoon of May 16, 2001. By her first year of high school, Adrienne had let go of everyone else's expectations and was, in Andrea's words, a hundred percent herself — a 4.0 student, a gifted artist and writer. The house rule was homework first, so Andrea usually walked in to find her at the kitchen table. That day she found her on the floor, crying, saying she couldn't breathe. Six hours later, after the pediatrician and the local ER, a doctor told them there were tumors in her liver and lungs. She was transferred by ambulance that night to Children's Hospital Los Angeles. Fifteen years, and fifteen years old Within two days Adrienne had imaging and a biopsy, and the diagnosis came back Stage IV HCC. The doctors asked why Andrea had custody and what their mother's history was, then tested Adrienne for hepatitis — and found chronic hepatitis B and C. They believed she had acquired both at birth: there was no prenatal hepatitis B screening in 1986, and hepatitis C had not yet been identified or removed from the blood supply. When Andrea later found the literature, she learned the average interval from chronic hepatitis B to liver cancer is fifteen years. Adrienne was fifteen years and one month old. Had they known of the exposure, she would have been under surveillance with scans at least twice a year — and at her age, if caught early, she would have been eligible for a liver transplant. The rejection that founded the organization: At the first anniversary of Adrienne's death, Andrea was acutely suicidal. Her partner John, who had been present for most of the years she raised Adrienne, said one sentence that stopped her and sent her looking for somewhere to put the grief. She approached the largest liver disease nonprofit in the United States, offering to volunteer — writing the liver cancer content their website didn't have, for free. They refused; she learned years later it was an internal policy against touching the subject. She admits that if they hadn't said "no", Blue Faery wouldn't exist. Then she found that no organization in the country was working on HCC at all, and remembered a line attributed to Lily Tomlin — "I thought somebody should do something about that, and then I realized that somebody was me." A medical dictionary and a stack of photocopies. The education pillar came first, and it came from a specific grievance. When Adrienne was diagnosed, Andrea was handed one-sheets about the chemotherapy and nothing at all about the disease. She asked the doctor who performed the biopsy for more; he told her nothing like that existed, then photocopied pages from his medical textbooks and brought her a stack she couldn't understand. So she bought a medical dictionary — which she still has — and a copy of Gray's Anatomy, and began translating it into plain language herself. Writing the book was not cathartic. Andrea is direct about this because people keep assuming otherwise. The first draft took two years, and she describes it as cutting yourself open every single day, letting it start to scab, and cutting again. The organization came first; the book came later. Why leaving Los Angeles made the organization national: Andrea moved to LA at eighteen for USC and never expected to leave. Adrienne is buried at Hollywood Forever. She left in 2014 anyway, and says the organization genuinely took off afterward — the board could no longer meet in person, which forced a national focus, and she began meeting the advisors who helped it grow. She didn't become a full-time employee until 2020. The distributed team also meant that when COVID arrived, Blue Faery was already remote, already equipped, and not dependent on events for revenue. Why liver cancer is caught late: The liver has no pain receptors. If you don't know you have underlying liver disease — and most people with liver cancer do, but not all — and you aren't under surveillance, the cancer is usually found by accident. In Adrienne's case, her liver had swollen enough to press on her diaphragm, which is why she kept saying she couldn't breathe. Her only other symptoms were acid reflux, which can mean anything, and right shoulder pain, which turns out to be a sign of advanced liver cancer because of a nerve running from the liver to the right shoulder. Her pediatrician had seen her for that shoulder two weeks earlier and misdiagnosed it — which Andrea is careful to say was not his fault. Fatty liver disease is now the leading cause. For a period, hepatitis C was the most common underlying cause of primary liver cancer in the US. With curative hepatitis C drugs on the market, that has shifted: fatty liver disease — MASLD, and its more severe form MASH — is now becoming the most common cause in the US and in some other Western countries. What frustrates Andrea most is how the diagnosis gets delivered. People are told they have fatty liver and advised to lose weight, and nobody tells them it puts them at risk for liver cancer. Her instruction is plain: if you are told you have fatty liver, you need to be screened for liver cancer. Worldwide, there are more than 900,000 cases annually and almost as many deaths, around 800,000; in the US, roughly 42,000 cases, which still classifies HCC as a rare cancer — with a death toll nearly matching the case count because it is found too late. "I didn't know she was a drinker." When Adrienne was diagnosed, the only thing Andrea knew about liver cancer was that it came from drinking. She wasn't alone. More than one of Adrienne's friends' parents said, out loud and in front of Adrienne, that they couldn't believe it — they hadn't known she was a drinker; she was a straight-A student. Andrea and Adrienne laughed, because how much would a fifteen-year-old have to drink? You'd have to start with the bottle. Andrea says Blue Faery was born partly out of Adrienne's own wish that people understand the real underlying causes. What she'd tell another founder: two lessons, both stated against her own instincts. First, pay yourself. Blue Faery was proudly all-volunteer for years and couldn't grow; if you aren't taking a real salary, your numbers don't reflect what the organization actually costs. She mentors a younger nonprofit leader and told her flatly, having lo
