Something I learned overnight: in the world of pediatric oncology, it’s tough when patients die of their cancer, but it’s a whole world tougher when they die of the treatment.
In April, I met a 12 year-old young man who presented with a new chest wall mass that was found to be Ewing’s sarcoma. His workup revealed a small spot of active tumor in one of his spinal bones; this put him in a group of patients with a much worse prognosis (between 10 and 20% survival rates). Through his first two cycles of chemo, though, he stood strong, tolerating terrible nausea, fatigue, and mouth sores while joking with us and melting the hearts of pretty much everyone who was involved in his care. Soon thereafter, his scans showed that his tumor had had an amazing response, a response that led us all to be incredibly optimistic that he’d fit squarely into the aforementioned 10 to 20% group.
Before three weeks ago, I only saw his will crack once, during a visit to the surgeon right before he was scheduled to have the primary mass resected. His mass arose from one of his ribs, and the surgery entailed removing that section of rib, as well as sections of the ones above and below it. The surgeon paged me and asked if I would come over; when I got there, my young patient was crying and terrified of going onto the operating table. We spent 10 or 15 minutes talking it through, and his strong will to get better won out. His surgery went well, his subsequent six rounds of chemo went equally well, and my optimism continued to rise.
Two and a half weeks ago, my patient came in to start his next round of chemo but looked terrible. He told me that he was increasingly short of breath, and that he was having problems sleeping flat at night — classic symptoms of heart failure. I got a chest X-ray that confirmed that he had fluid in his lungs and a severely enlarged heart, and suspected that he had suffered a very rare toxicity from one of his chemo drugs, a worst-case scenario that was confirmed by the cardiologists after he was admitted. He spent most of the rest of the week in the cardiac ICU, and managed to make it home last weekend on a reasonably effective regimen of new cardiac medicines. He came back in last Monday to start another round of chemo, heavily modified to help his heart tolerate the stress, but quickly got sick again and spent another five days in the ICU. He came out to the general floor over the weekend, but again worsened yesterday and was urgently transferred back to the ICU. Last night, things became more acute, and after a trial of noninvasive respiratory support (BiPAP) failed him, he was intubated. Two hours later, on maximal medical and ventilatory support, his heart stopped, and he passed away.
At around 11PM last night, I got the call from the ICU fellow saying that he had taken a turn for the worse, and I made it in just as they had started him on BiPAP. Sadly, the person in the bed wasn’t the strong adolescent I had come to expect, but the terrified one — he was overwhelmed with the situation, and all too aware that things didn’t look good. I spent about an hour with him and his family, and when he seemed stable, I returned home. Three hours later, the fellow called to say that they had just intubated him, and I went back in to spend the last two hours at his bedside. He was paralyzed on the ventilator, his family was devastated, and the ICU staff was stunned at how quickly he was worsening. After he died, I came home and crawled back into bed; my sleep was restless, and the one thought that permeated every ounce of my being was that cancer didn’t kill him, a toxicity of his cancer treatment did. That makes this a million times harder to deal with.
