‘We never stopped believing’: Benny’s journey with liver cancer

Earlier this year, 12-year-old Benny helped his dad, Ben, build a deck around his family’s pool. Moving boards, handing each other tools — DIY projects are a rite of passage for many kids and their parents. But the experience was even more meaningful for Benny and Ben.

“I got to enjoy that kind of father-son moment for the first time,” says Ben. “Benny was out there helping me — because now, finally, he can.”

It’s taken several years — and a lot of ups and downs — to get here. In June 2021, Ben and his wife, Christin, noticed that Ben’s skin and eyes had a yellow tinge — a sign of jaundice. Their pediatrician recommended that they bring Benny, then 8, to their local children’s hospital in Ohio, where he was ultimately diagnosed with hepatocellular carcinoma (HCC).

This form of liver cancer is rare but aggressive — and had already spread to Benny’s lungs. The stage 4 diagnosis was devastating, but Ben and Christin refused to give up hope.

“When we were told he had a 10 percent chance of surviving, I said, ‘He’s that 10 percent. We don’t lose,’” remembers Ben. “Then, of course, I started bawling.”

Finding the right expert

While Benny began his first round of chemotherapy in Ohio, his parents set about researching their options. Coincidentally, one of Ben’s cousins is an executive at a Boston-area biomedical company that manufactures one of the drugs used to treat HCC. She reached out to doctors throughout the country, eventually landing on one in her own backyard: Dr. Allison O’Neill, director of the Liver Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

After reviewing Benny’s medical records and speaking with his family, Dr. O’Neill believed she could help. She reviewed his treatment plan and worked with his oncologist in Ohio so Benny could continue to undergo chemotherapy close to home — a huge benefit for Ben and Christin, who also have a daughter.

“Dr. O’Neill was always there in the background to consult,” says Ben. “She’s just an amazing doctor and human.”

Ups and downs

But Benny’s challenges were far from over. Although chemotherapy helped, it wasn’t enough to shrink his three golf ball-sized tumors. Through discussion with Dr. O’Neill, Ben and Christin decided that surgical removal of the tumors would be the best next step. Despite the potential risks, they felt so confident in Dr. O’Neill’s colleague Dr. Heung Bae Kim that they traveled to Boston Children’s for the procedure. It was a success: After undergoing surgery that removed three-quarters of his liver, Benny was out of the hospital in just four days.

The next couple of years held more courses of chemotherapy at home in Ohio, ultimately culminating in good news for the family: Benny’s cancer was gone. But before he had the chance to thoroughly enjoy life cancer free, it returned.

Transplant offers another option

This time, however, the cancer hadn’t spread beyond Benny’s liver. That put a new option on the table: a liver transplant. Although they knew that Dr. Kim would do a fantastic job, the family hoped that Benny could receive his transplant closer to home. The team at Boston Children’s had a solution.

“Dr. O’Neill and Dr. Kim put us in touch with a colleague of theirs in Cincinnati who could perform the transplant,” says Ben. “They’ve connected us in so many ways over the years.”

By October 2023, Benny had just been added to the waiting list for transplant when his parents attended a wedding, planning to review more information about the procedure when they returned. The call came that very weekend: There was a donor liver for Benny.

Caught up — and thriving

After rushing to Cincinnati with his parents, Benny underwent a liver transplant and then one more round of chemotherapy. Although he’s had a couple of bumps in the road since then, including appendicitis, his family hopes that his long journey with HCC is finally over.

Right now, Benny is thriving. After missing about two years of school, he’s completely caught up.  He loves playing baseball and golf, watching football, and riding his bike and is obsessed with planes, helicopters, and drones. He’s able to focus on just being a kid.

His family is grateful for all the support they’ve received in helping him achieve that — particularly from Ben’s cousin and Dr. O’Neill.

“We never stopped believing, no matter how bad things got, and neither did they,” says Ben. “They helped make it possible for Benny to be here today.”

Learn more about the Liver Tumor Center.