Faced with a rare type of liver cancer, Ramie focuses on the positive

When Ramie Darling learned that his liver cancer had recurred, he thought for a while and then simply said, “OK.” Asked by his parents if he understood the situation, he replied, “I know I need more treatment. But whenever there’s a ‘down’ in life, I just think of the ‘ups.’”

It’s an attitude that has served 11-year-old Ramie — and his parents, Katie and Ramie, Sr. — well since he was first given a frightening diagnosis of stage 4 cancer two years ago.

“He’s walked this path with so much courage,” says Ramie, Sr. “And that’s given us strength, too.”

A life-changing diagnosis

Ramie’s journey began when an MRI scan in his home state of Florida revealed the suspected cause of his low appetite and other symptoms: a rare type of childhood liver cancer called hepatoblastoma, which had already spread to his lungs.

“That was the moment that all of our lives changed,” says Ramie, Sr.

After doing more research, he and Katie were able to connect with another Florida family whose son had recently been treated by Dr. Allison O’Neill, director of the Liver Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. They decided to make an appointment and fly to Boston to meet Dr. O’Neill, nurse practitioner Casey Wall, and the rest of the team.

Determined to do anything for their son, the Darlings acted quickly. “About 15 seconds after we met with them, we knew we would temporarily move to Boston for his care,” says Ramie, Sr.  Katie flew home to Florida, packed up their car, and hit the road north while Ramie and his dad stayed so he could start treatment immediately.

A series of “ups” and “downs”

The next two years were rocky. Further assessment of Ramie’s tumor led to a diagnosis of hepatocellular neoplasm not otherwise specified (HCN-NOS) — a more-aggressive tumor that occurs in older children and has features of both hepatoblastoma and hepatocellular carcinoma.

After chemotherapy and surgery to assess for residual disease in his lung, Ramie ultimately needed a liver transplant with the Center’s surgical co-director, Dr. Heung Bae Kim, and Dr. Eliza Lee. Following more chemotherapy, he returned home — only to have the cancer recur in his lungs soon after. When more surgery, additional chemotherapy, immunotherapy, and multiple recurrences led to more hospital stays, Ramie and his dad moved back to Boston to be closer to his care team.

It was a sacrifice not just for Ramie, Sr., who owns his own construction company, but for Katie and Ramie’s two sisters, who remained home in Florida. Yet the Darlings say they would do it all over again if necessary.

“We were willing to do whatever we had to,” explains Ramie, Sr. “If it meant Ramie would have even a 0.1 percent better chance of beating cancer, we would do it.”

At the same time, the family tried to find the positive where they could. Together, father and son made a list of things to do and places to see while they were in Boston. When the cancer recurred, Ramie pointed out that the “ups” of the situation were that they still had things to cross off their list.

Boston Children’s and The Jimmy Fund also offered much-needed fun opportunities for Ramie — including tickets to games and a personal meeting with Mac Jones, then a quarterback for the New England Patriots. (Despite Jones’ move to the Jacksonville Jaguars, both Darlings say they remain Boston sports fans for life.)

A good experience — and great news

Today, Ramie finally has good news: Four consecutive follow-up tests show no sign of cancer, and Dr. O’Neill and her team are pleased. Now back in Florida, he’s started school again and returns to Boston for follow-up appointments — where he insists on wearing flip-flops, even in chilly temperatures. He loves architecture and history and hopes to become a developer someday, a career choice not unlike his dad’s.

“When you build a house, it’s not just about the end product. It’s also about the whole experience,” says Ramie, Sr. “We’ve had good results with Ramie’s treatment, but the experience with his care team has added people to our lives that we consider family now. We definitely made the best choice.”

Learn more about the Liver Tumor Center.