Kristie L. Kahl
Adrienne Wilson - Photo courtesy of Andrea J. Wilson
Imagine finding out your loved one is diagnosed with hepatocellular carcinoma (HCC), and the only source available to learn about this disease is from a medical textbook.
Andrea J. Wilson and her sister, Adrienne Wilson, experienced just that. On May 16, 2001, Adrienne – who Andrea raised from the age of 8 years old – came home from high school experiencing intense pain under her right ribs. Following a visit to the emergency room, physicians discovered tumors in Adrienne’s liver and lungs, a diagnosis which she passed away from just 147 days later at the age of 15.
One year after her sister’s passing, Andrea tried to alleviate her grief by volunteering, in particular, by raising awareness and educating people on liver cancer. However, after reaching out to a larger nonprofit, she learned that no advocacy groups focused their attention specifically to this area. So, Andrea, as well as friends and family of Adrienne, started Blue Faery.
Blue Faery, the Adrienne Wilson Liver Cancer Association, is a nonprofit corporation founded in 2002, with the intent to prevent, treat and cure primary liver cancer – particularly HCC – through research, education and advocacy. Its name, inspired by Adrienne, has a unique background.
“The name came about because Adrienne’s favorite color was blue, and she loved fairies, and she even had blue hair when she was diagnosed,” said Andrea, founder and president of Blue Faery, in an interview with CURE
. “So, when she began losing her hair, she asked for a blue wig to ‘maintain her look,’ she called it. And then the summer she was sick, she bought these blue butterfly wings and when she had the blue hair and the blue butterfly wings on, we started calling her our blue faery.”
One of the first initiatives Andrea prioritized for the organization was to better educate patients and their caregivers on primary liver cancer. “[Adrienne] was incredibly inspirational when she was sick. She may have been 15, but most people would say she was incredibly wise beyond her years,” Andrea added. “She wanted to educate people on her cancer because, like everyone, we really didn’t know anything about liver cancer.”
After Adrienne was diagnosed, Andrea received one page’s worth of information on the different chemotherapy drugs to treat HCC. However, when she queried for more information, she was informed there really wasn’t anything. So, the physician who did Adrienne’s biopsy made Andrea copies of his medical textbook for her to reference.
“I felt incredibly stupid because I didn’t even understand what it said. I bought a medical dictionary – that I still have that is like two inches thick – and I went through and translated all of this medical jargon,” said Andrea. “I couldn’t believe there were no patient education brochures and information readily available for patients. So, that really stuck and never went away.”
Therefore, Blue Faery started with the education portion of its mission first. The organization created the first ever HCC patient education brochure. The brochure, specifically written in laymen’s terms, is free for patients, their caregivers, as well as health care providers on BlueFaery.org
. It has found its way in to more than 40 cancer centers, and is available in multiple languages.
“We just want patients to have the information and know the types of questions they should be asking their doctors,” Andrea said.
Another initiative to further research in HCC is the organization’s Blue Faery Award for Excellence in Liver Cancer Research – an annual award that honors a researcher who has made significant contributions in the advancement of scientific knowledge in the diagnosis, treatment, prevention or understanding of liver cancer. To honor Adrienne, the award is announced every year on her birthday, April 8.
Launched this year, Andrea also highlighted her 40-episode podcast derived from the book she wrote about Adrienne’s journey with HCC – titled “Better Off Bald” – from a diary-kept perspective. The podcast was launched on May 15 of this year to reflect the actual timeline of Adrienne’s story. The first podcast was based around the day before Adrienne’s diagnosis, and continued on through her treatment, ending on Oct. 17.
“I had no idea what to expect. It has been amazing,” said Andrea. “It has not only helped to raises awareness of liver cancer and Blue Faery, but the response has been really incredible. It has led to us getting more volunteers, which I never saw that coming, and it has been a really positive experience.”
Next up, Blue Faery plans to launch patient forums, which currently does not exist for patients with HCC. After receiving a Google ad grant, the organization is currently working to market the forum and get the word out. “We are really stressing it is not the place to go for medical advice. But it is a good place to go where you can go and talk to someone else who has the same diagnosis as you,” Andrea added.