Episode 347: Love Becomes Purpose - Adrienne's Sissy

Parent. Sister. Friend.

That was the order Andrea established with her little sister Adrienne when Adrienne was just nine years old, fresh into a new life in Los Angeles after their mother signed over custody on the day after Christmas. Andrea was twenty-two. She had not planned any of this. But she looked at her little sister and she knew.

And so she laid it out simply: I have to be your parent first, then your sister, and one day when you grow up, I really hope I'm your friend.

Adrienne understood. She had a painting made for Andrea's office wall. It said: Parent, Sister, Friend.

That painting still hangs there today.

Andrea raised Adrienne from the age of eight, working four part-time jobs to stay on her schedule, becoming a substitute teacher so she could be home when Adrienne walked in the door. She gave her stability, consistency, and a love that was fierce and steady and completely unconditional. Adrienne thrived. She found herself in high school, earned a 4.0 GPA, stopped caring what anyone else thought, and became exactly the kind of bold, vivacious, deeply caring young woman you would expect from a girl raised by someone like Andrea.

And then, three weeks before the end of her freshman year of high school, Adrienne came home from school and curled up on the living room floor in pain. She could not breathe. What followed was 147 days — a diagnosis of hepatocellular carcinoma, primary liver cancer that had already spread to her lungs, caused by hepatitis B and C she had received from their mother at birth and never known about. One hundred and forty-seven days of fighting, of blue wigs and butterfly wings, of a girl who joked her way through a CAT scan and named the family cat after synthetic marijuana.

Adrienne died on October 9th, 2001. She was fifteen years old.

A year later, Andrea was suicidal. She had lost not just her sister but her entire purpose for being. Everything she had done, every job she had chosen, every sacrifice she had made for nearly a decade had been for Adrienne. And now Adrienne was gone.

It was her partner who stopped her. He said simply: if you go ahead and kill yourself, she is never going to forgive you.

And Andrea knew he was right.

So she found a way to channel her grief. She called the largest liver disease nonprofit in the country, pitched herself as a volunteer, and was turned down flat. That rejection sent her searching, and what she found was a gap so large it was almost unbelievable. There was not a single organization in the United States dedicated specifically to HCC, the cancer that had killed Adrienne. So Andrea founded one. She named it Blue Faery, the Adrienne Wilson Liver Cancer Association, after Adrienne's beloved blue hair, her blue wig, and the blue butterfly wings she was buried in.

The day Blue Faery was officially incorporated was December 19th, 2002. Eight years to the month from the day Adrienne came to live with her.

It felt like everything was lining up.

Today, Blue Faery is the leading HCC nonprofit in the country, providing education, advocacy, and community to patients and families navigating a disease that is both more common and more preventable than most people realize. Andrea has also written a memoir, Better Off Bald: A Life in 147 Days, which tells the story of the seven years she raised Adrienne and the 147 days she fought to save her.

Parent. Sister. Friend. And now, advocate.

Love, it turns out, does not need somewhere to go. It just becomes purpose.