Denny Schoonmaker recently addressed an audience of over 30,000 people—a pretty big accomplishment for anyone, but especially impressive for a child who has only been speaking in full sentences for twelve months.
At last Friday’s Boston Red Sox game, Denny told a packed Fenway crowd that it was time to “play ball,” a fantastic way to thank the city that has been his and his family’s second home for the better part of the past year.
A young boy with an old man’s walk
At 2 years old, Denny started hunching his shoulders when he toddled across his home in North Carolina, which his mother Mandy affectionately dubbed his “old man walk” the first time she saw it. But as the hunch became more pronounced—and became accompanied by a hardened belly—Mandy worried it could be the sign of a more serious problem, so she took Denny to the hospital.
Tests were ordered and revealed that Denny had hepatoblastoma, a form of liver cancer usually found in young children. Doctors explained to Mandy and Doug, Denny’s father, that treatment for hepatoblastoma usually involves a combination of chemotherapy to stabilize or reduce the cancer cells in the body and surgery to takeout the diseased areas of the liver (a technique know as a liver resection.) In situations where the cancer is particularly aggressive, a liver transplant may be the patient’s only chance at recovery.
Within three chemotherapy sessions, it was clear that Denny’s cancer was aggressive enough that a liver transplant was likely to be his best option. At just 2 years old, the young boy was prepped for what would be the first of many surgeries in his young life.
An unwelcome surprise
Denny’s local doctors did not perform transplants, so the Schoonmakers were flown to another hospital with more experience with cases like his. Within a few weeks, a new liver became available, and Denny was taken to the surgical suite.
But, when doctors opened Denny’s small body to operate, they were surprised to see that his tumor had spread outside of his liver, marking a serious complication with his treatment. If the liver was transplanted, there was a very good chance that his disease might attack it as well, or spread elsewhere. Given the circumstances, the operation was halted, and his medical team met with Mandy and Doug to discuss next steps.
“In the short term we knew we had to put Denny back on chemotherapy, but we also knew that it wasn’t a permanent solution for him,” Mandy remembers. “At that point, we started researching hospitals that could help us through this journey.”
Between online research and personal recommendations from members of their care team, the Schoonmakers contacted Boston Children’s Hospital where they were put in touch with Heung Bae Kim, MD, director of the Pediatric Transplant Center and co-director of the Liver Tumor Program. After studying Denny’s case, Kim thought it might be possible to save Denny’s liver by resecting the tumor.
“Dr. Kim was amazing, and after just a few minutes we knew we had made the right choice coming to Boston Children’s,” Mandy says. “He explained that, while [the surgery was] tricky, he hoped he could help Denny avoid transplant through surgical resection. But he was also clear that if that didn’t work, he would be able to offer a liver transplant. Knowing we had options put us more at ease.”
In a few days time, Denny underwent his first surgical resection during which Kim and his team removed a large portion of the boy’s liver affected by hepatoblastoma. The surgery was successful, but Denny’s cancer slowly returned. He received chemotherapy near his home in North Carolina, but three months later Denny was back in Boston for a second surgery. When he returned a third time with the same symptoms, Kim knew it was time to reevaluate Denny’s treatment plan.
“The writing was on the wall that if after that third resection Denny still had tumor left in him, we would have to explore the second option,” he says. “After that many resections, I simply ran out of liver to remove. The only option left to save him would be a liver transplant.”
A second shot at transplant
Unfortunately, the third resection failed to fully remove the hepatoblastoma in Denny’s liver. So his name was again added to the organ transplant waiting list, and a month later Mandy received the call that it was time to bring Denny in for his transplant surgery. Given the seriousness of the call, one might expect Mandy to be incredibly nervous, but after arriving at Boston Children’s and placing her son in the care of Kim and the team, she says she was far less anxious than she had been at the beginning of Denny’s treatment.
“The first time Denny was operated on for the liver resection was extremely stressful, especially because that was the first time we had ever met Dr. Kim,” she says. “But by the time Denny got his new liver, Dr. Kim and his team had been treating us for so long they were like family. We trusted them so completely that we were far less nervous than we had been a few months before.”
The liver transplant was a success, and after a second surgery to readjust the new liver’s placement, Denny is now ready to start his new life as a healthy, 3-year-old.
In the few months since Denny’s liver transplant, he has been seen by Kim, who monitors him for any signs of tumor recurrence, while also receiving chemotherapy from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center to rid his body of any small pockets of cancer cells that may still be lingering. And while the Schoonmakers are anxious to get home, they also have a great deal of love for their adopted home city. “If you have to be away from home for an extended period of time, Boston is a great place to be,” Mandy says. “Both medically speaking and in terms of all the great things there are to do here, I couldn’t think of a better city to make our second home for the past few months.”
As part of their send off home, members of Denny’s care team at Dana-Farber/Boston Children’s arranged for Denny to be a special guest at a Red Sox game, saying every baseball fans two favorite words over Fenway’s public address system.
Now, as the Schoonmakers prepare to head home, Mandy says Boston and Boston Children’s will always have a special place in her heart.
“I’ll never forget the time Denny went in for his second surgery, when a nurse called from the operating room to let me know that everything was going fine,” she says. ”She also told me that before the surgery, she asked Denny what his favorite song was, and then the whole medical team sang “Twinkle, Twinkle Little Star” to him until he fell asleep. There were so many instances like that in our time here, and every single one of them will stay with me forever.”
To learn more about Boston Children’s Liver Transplant Program, visit their website.
To learn more about Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, visit their website.