Owen's Family Brings Awareness to Fibrolamellar Carcinoma

Twelve-year-old Owen was supposed to be in his prime, according to his dad, Mike, making it a shock when abdominal pain led to a diagnosis of fibrolamellar carcinoma.

This rare liver cancer primarily targets teenagers and young adults, frequently spreading beyond the organ before early symptoms manifest. At the time of his diagnosis, the family said that other patients, such as Meghan Tompkins in 2017, have also sought specialized treatment for rare forms of liver cancer at the Dana-Farber/Boston Children’s facilities.

Fibrolamellar carcinoma behaves with aggression, forcing families to make complex medical decisions. For Owen’s family, the initial low energy was easily mistaken for typical tween moodiness, leading his parents, Mike and Cassie, to initially believe his behavior was normal for his age.

In May 2026, Owen underwent extensive surgery performed by Dr. Heung Bae Kim, surgical director of the Liver Tumor Center of Excellence at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. The procedure involved an extensive resection to remove as much of the primary tumor as possible, marking a critical turning point in a battle that has battle-tested the family.

Researching specialized care led the family from their local hospital in Rhode Island to Boston Children’s Hospital and Dana-Farber Cancer Institute. Dr. Allison O’Neill, medical director of the Liver Tumor Center, spearheaded Owen’s oncological treatment and coordinated with local medical teams in Rhode Island so he could receive chemotherapy closer to home.

Decision-making within the household involves keeping Owen fully informed about his treatment path. “We’re not going to hide anything from him,” Mike said, noting that giving Owen a voice in his care has proven vital for the family.

Alongside conventional medical protocols, Owen has incorporated the traditional Chinese practice of qi gong, utilizing gentle movements and meditation to maintain a positive mindset. “He’s a wise old soul and has a very positive mindset,” Mike said.

Acceptance is the key to true peace.
— Owen’s personal motto, as shared by Mike

Community support has emerged from both friends and teammates who organized a fundraiser, allowing Owen to cheer from the sidelines while missing soccer season. Beyond his parents and older brother, Tyler, Owen’s support system features a network of new and old friends who frequently visit. The family also found deep reassurance among the hospital staff, noting the care shown by everyone from physicians to janitors.

“Before Owen had surgery, we knew the odds of him surviving weren’t great, but we walked around with smiles on our faces anyway,” Mike said. “We’re kinder to other people now, because you never know what someone is going through — we want to pay forward the kindness we’ve been shown.”