Daniel had been a patient for over two years, since February 2013 when he was only 14 years old. He was a patient before we even had a chemotherapy program. I spotted him waiting for an appointment with a surgeon in February 2013, massive tumors bulging out of his neck atop the thin frame of a malnourished boy. It took months to diagnose the exact type of cancer, requiring two biopsies sent to three different pathology labs.
Radiation is not available in Haiti. After a biopsy showed a type of throat cancer only treatable with radiation, we started the process to get Daniel to the Dominican Republic. We practically forced our way into the Dominican embassy, finally securing him a visa. He travelled twice to the Dominican Republic, requiring two full months of radiation therapy.
Four months later, Daniel was losing weight and unable to swallow. A CAT scan confirmed suspicions that the tumor had eroded into the bones of his skull and had narrowed his esophagus. We placed another tube in his stomach to feed him, but it fell out — twice. He continued to lose weight and was not much more than a frail skeleton at that point. Rather than put him through another surgery that might only prolong his agony, I suggested to his mother that he go home and spend his time with the family. Daniel wailed when he finally understood that this was it, that there was nothing more to be done.
I thought about Daniel a lot over the next six months, wondering how he died and where. Most possibilities were terrible. Did he dehydrate because he couldn’t swallow water? Or did he suffocate when the tumor grew so large that it blocked his airway? One awful vision after another kept me up at night, the personal price of working in such a difficult field.
Long days and tough times like these were starting to stack up. Three women in their forties, all with breast cancer supposedly in remission, died suddenly at home. One almost certainly had a recurrence with metastasis to her brain. The other two deaths remain a mystery, although I suspect that in both cases a blood clot in the lung, often a harbinger of a cancer recurrence, may have taken their lives.
Operating a cancer treatment program is not easy and we have lost nearly a quarter of our patients over the last two years. Of course, that means that 75 percent of our patients are alive and well, back at work or play, enjoying their lives once again. As a doctor, it’s really the failures that stick out, that you take personally and internalize. Some of it surely must be ego, a personal attack that we’ve failed, an ‘F’ on an otherwise clean report card. In cancer care, you also grow to know the patient personally over the course of four months of chemotherapy and surgery. You meet their family and learn how they handle losing their hair or a breast. When they pass, it’s more than just losing a patient you cared for during a brief hospitalization. They are closer to being friends.
After the rapid sequence of patient deaths, I was terribly discouraged. If those women in remission had died suddenly, what did that mean for the others? Were we doing something wrong? Or worse, were the critics right that cancer care is too difficult for developing countries to tackle at the moment?
I was pulling into the hospital when my phone rang; it was Daniel’s diligent mother. I expected her to inform me that he had passed a month or two prior. We exchanged pleasantries and I thought that she was calling to say hello or to say thank you again, which family members often do months after the death of a loved one. I wasn’t sure how to phrase the question, “Did Daniel die?” Even asking “How is Daniel?” would force her to answer with “Dead.”
I settled on, “And Daniel?” my voice raising softly to leave her some room to maneuver.
“He’s here. He’s okay. Do you want to talk to him?”
“Alo?” said a voice, deepening and cracking, fragile in the throes of puberty. The boy was becoming a man, puberty itself a signal that the now 16-year-old was developing, finally growing because his overall health and nutrition had improved.
“Wi,” the man’s voice said.
“Wow.” My jaw dropped, followed by a huge grin. We talked for a few minutes. He told me how he was feeling and said he had put on weight. He was back in school, learning with his peers again. He handed the phone back to his mother who explained that Daniel’s swelling had continued to decrease. Not only was he not dead, but he continued to improve, a minor miracle.
I don’t have a medical explanation. Perhaps the CAT scan noted erosion that had been previously present but wasn’t seen because the tumor was obstructing the complete view. Maybe scarring from the radiation, and not a recurrent tumor, had constricted his esophagus and the tissue relaxed over time, allowing him to swallow. It’s certainly still possible that the tumor will recur, but it’s been almost a year now since he completed the radiation therapy.
Sometimes things go right and sometimes they go wrong. Sometimes, they go wrong and then they go right. And sometimes, inexplicably, minor miracles offer us small victories, even if only temporary.
Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.