What happens after a medical crisis ends? What if the person who was ill is a child - someone who will carry the after-effects of a life-threatening illness throughout their formative years and into adult life? As the pediatrics writer at Lucile Packard Children's Hospital, I often wonder what the future holds for the children in my stories.
I got the chance to take an up-close look at the aftermath of a medical crisis when I wrote about six-year-old Isabelle Wagner, who just passed the five-year anniversary of surgery to remove a golf-ball-sized brain tumor. Isabelle is doing really well: climbing trees, progressing through first grade, and playing with her little brother Ryan. But her parents remain on the lookout for problems that could stem from the radiation and chemotherapy she received after surgery to vanquish her cancer. She may still encounter developmental difficulties or have a secondary tumor from the radiation exposure, for instance. And there is a chance, though by now it is very small, that her original tumor could return.
For my story, which appears in today's Inside Stanford Medicine, I asked Isabelle's parents how they felt about the five-year anniversary, which is typically the point at which oncologists start to describe patients as "cured:"
"It's fantastic," said Isabelle's dad, Derek. "And yet there's a bit of holding back, the feeling that this isn't over."
"I'm really excited. But that scares me, to be excited," said Isabelle's mom, Heather, who still worries about letting her guard down about her daughter's health.
Isabelle's oncologist, Paul Fisher, MD, acknowledges that one of the big challenges of his job is helping families navigate the uncertainty that Derek and Heather face. Isabelle has done very well, he says, but even when his patients thrive, the difficulty is the same.
"Right from the word go, I have to broach the issue that the treatment's going to have costs," Fisher told me. "I do tell families that we want to cure their children and mitigate long-term problems [that could arise from chemotherapy and radiation], but there is going to be a risk to that."
Photo: Isabelle at Disneyland. Courtesy of the Wagner family