The Resilience of Penny DeBoer
Penny DeBoer was just a year old when she was diagnosed with stage 4 high risk neuroblastoma. By that time, the cancer had already spread across Penny’s little body, and she was deathly ill.
It was shocking and gut wrenching,” says mom, Andrea. “We were terrified."
To complicate matters, at the time of her diagnosis, Penny was the DeBoer’s foster child. But Andrea says that despite all the challenges of having a foster child diagnosed with cancer, there was also a bright side: As a ward of the state, Penny was referred to UCSF Benioff Children’s Hospital Oakland, where no child, regardless of their insurance status or ability to pay, is turned away.
“In some ways I’m glad she was a foster kid at the beginning, because that’s why we were at UCSF Benioff Oakland,” says Andrea. “I don’t think we would have survived without that community. The care was second to none.”
Even so, the treatment process was harrowing. For nearly two years, Penny underwent multiple rounds of treatment, including chemotherapy, radiation, surgery, immunotherapy, stem cell transplants, and additional rounds of immunotherapy. She loved her physician, Dr. Carla Golden, but the side effects were debilitating. By the end, Penny had suffered permanent vision loss.
The turning point came when Penny turned 3. The family learned about an early-stage clinical trial for Difluoromethylornithine (DFMO) – a medication for preventing relapse in neuroblastoma patients that was changing the survival rates for children like Penny.
“It was the thing that gave us hope,” Andrea says. “No matter what, there was always this fear that the cancer was going to come back. The relapse rates are so grim. But with DFMO, we looked at the numbers and it felt like a bright light. We felt like we could still do something to help our child live, and grow, and blossom.”
Not only did the new therapy give the family hope, it was also the easiest treatment experience of Penny’s long journey. Gone were the debilitating side effects and exhausting treatment regimens. By the time she started kindergarten, cancer treatment was finally in the rear view.
“For us, it didn’t feel like a risk. It was absolutely the right choice for our daughter,” says Andrea. “It was a life-saving, less toxic treatment that every kid should have access to. These trials save kids’ lives.”
Today, Penny is 7 years old and thriving. The DeBoers officially adopted Penny, and have never looked back. While many of the side effects of cancer treatment, including the vision loss, will follow her for the rest of her life, she has nevertheless grown into a cheerful, silly, independent, and resilient child who loves school and gymnastics and dreams of becoming a doctor one day.
“Foster kids like Penny are an under-resourced population that still deserves exceptional care,” says Andrea. “Just because you’re in the system doesn’t mean you shouldn’t have access to the best possible care. And at Oakland, she was able to access that, as were so many other under-resourced families who we met while we were there. I wouldn’t have wanted my child anywhere else in the world. It was just the right place for us.”
