Waiting for a Miracle

DOI: 10.1200/JCO.2012.42.3681 I met Michael during my first year as a pediatric hematology and oncology fellow. He was a charismatic yet shy Hispanic 18-year-old with the kindest smile you can imagine. I remember Michael as a model patient who followed every single therapeutic recommendation to the letter, with the hope of curing his recently diagnosed metastatic osteosarcoma. From day one, we had many long conversations about this new language of cancer—osteosarcoma, cure rate, metastasis, chemotherapy, alopecia, mucositis, nausea and vomiting, fever, neutropenia, limb-salvage surgery, percent of necrosis, palliative care, disease progression, and death—in the Spanish words and phrases with which he was most comfortable. Michael’s parents were hard-working undocumented immigrants who each held two jobs to support their six children, two of whom lived in the United States and four of whom lived in Mexico. It was difficult for Michael’s parents to make it to his scheduled clinic visits; instead, they would often arrive at the hospital late at night with delicious homecooked tacos and enchiladas. Michael enjoyed both foods tremendously throughout his admissions for preoperative chemotherapy. I used to joke with him that I was going to try tacos instead of antiemetics for my next patient, because I could not recall Michael ever having a single episode of vomiting. Time passed, and after twelve weeks of chemotherapy, the day of Michael’s surgery arrived. The orthopedic surgeons performed a limb-salvage procedure, but the primary tumor showed a poor treatment response. I shared this unfortunate information with Michael and his family and explained to them that, although the response had not been good, there was still a slim chance of cure, with a new, more intense chemotherapy regimen. He agreed to the new plan without hesitation, mentioning his faith that he would be healed; his kind smile and optimism remained unchanged. More chemotherapy, more tacos and enchiladas, and fortunately, no emesis followed. After Michael completed treatment, bilateral thoracotomies with wedge resection of palpable nodules showed persistent disease in his lungs. With no evidence of macroscopic disease after surgery, however, we stopped therapy, and Michael returned to his normal life. Unfortunately, this did not last long. Three months later, a few nodules reappeared in his lungs. From that point, Michael’s cancer progressed relentlessly despite additional thoracotomies, secondand third-line chemotherapy regimens, phase II clinical trials, and metronomic oral regimens. Michael’s quality of life remained relatively good throughout his treatment, and given his relative wellness, our discussions regarding his inevitable future were challenging and hard for him to grasp. I continued to meet regularly with Michael, his long-time girlfriend (whom I had not met before his relapse), and his parents. I would repeatedly begin our discussions with a dose of reality, taking care to explain that we were running out of therapeutic options. I told him that if disease progression continued, unmanageable symptoms would appear, and our only option would be to provide comfort and supportive care. Despite these difficult and sometimes grave talks, his kind smile remained steadfast. At the end of every conversation, I would ask, “Do you understand?” and his response would always be, “Si.” Although I used strong words like “palliative care,” “pain,” “respiratory problems,” and “death,” he did not seem unsettled. I recall countless conversations with Michael during which, even when I shared devastating news, his kind smile never left the room. Did his smile indicate a lack of understanding? A reflection of unadulterated faith in finding a cure? Or was there even greater significance hidden behind it? I choose to believe that it was Michael’s way of alluding to his firm belief that higher powers would care for both him and his loved ones. In the following months, new problems appeared—hemoptysis, brain and bone metastases, escalating pain with need for palliative radiation, and a decrease in Michael’s quality of life. With his symptoms progressing, I opted for more direct conversations regarding palliative care with Michael and his family. I thought my message was clear. I said, “We have reached the limits of cancer medicine, and we need to focus entirely on relief of your symptoms. If you continue getting sicker and the tumors in your lungs keep growing, your lungs will fail, and if we do not escalate your respiratory support, you will die.” Michael’s answer was always the same. He would JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 30 NUMBER 19 JULY 1 2012