Let It Be Hard

DOI: 10.1200/JCO.2015.62.0518 Long before he relapsed, and quite out of the blue, Alexander told me that he was not afraid to die. “I just don’t want to be in pain when it happens,” he said, matter-of-factly. I smiled and reassured him that he was not going to die and that once his counts recovered, he would go home from the hospital. “I will be expecting an invitation to your high school graduation party,” I added. For a time, I was right. Alexander got better in a few days and went home. However, several months later, his leukemia relapsed and death was imminent. I walked into his room early on a Sunday morning. Alexander was sitting up in a chair and with big eyes and a quiet smile he looked up and asked if he could go swimming. “Yes,” I said, instinctively. I was ignoring the fact that he was in no condition to leave his intensive care room. His strength was fading and he had not been out of bed in days. His frail body, ravaged by months of unsuccessful treatments for relapsed leukemia, was just skin and bones under his hospital gown. His bald head accentuated his big brown eyes and endearing smile. At 14, he seemed wise beyond his years, yet truly a child at heart, despite all that he had been through. “Yes,” I said, sitting down beside him. “You should go swimming today.” While caring for Alexander during his final days, I tried to keep him comfortable, although I struggled with grief and sadness. I sought counsel from a seasoned palliative care colleague. “It is just so hard,” I said, defeated. He listened, let me cry, and said, “It is hard. Let it be hard—it is rich.” Caring for dying children is both a great privilege and a heavy burden. The dying process is unpredictable and the desire to alleviate suffering can be overwhelming. At a time when parents desperately want control, our offerings feel inadequate. We can only walk the road with our patients, try to keep them comfortable and, when possible, break the rules to honor their requests. We do our best to ease suffering, but we cannot prevent death. During treatment we become intimately involved in the lives of our patients. From the first moments of a new diagnosis to the day-to-day routine of treatment, the relationship deepens. Tensions slacken, children warm up to us, and we inevitably fall in love with our patients. There is hope on the horizon. There are cancer survivors in the waiting room. Parents confer with one another about how it was for their child while undergoing chemotherapy. We counter their fear with confidence, reassurance, and optimism. But then there is relapse. When Kelly’s rhabdomyosarcoma relapsed, she was angry and swore she would never agree to more chemo. After talking about what it would mean to stop, she changed her mind and chose to proceed with nearly 3 more years of salvage therapies that ultimately failed to cure her very aggressive cancer. During that time, she graduated early from high school, completed a year of college, and joined a sorority. I attended her high school graduation party on the family farm, and bent rules to get her out of the hospital early for prom. I listened to stories of first college roommate disasters, and watched the unfolding of young love. As teenagers undergoing cancer treatment often do, she tested the limits of how late she could show up for appointments and admissions—but she never missed a treatment. Caring for Kelly during the final days of her life was exhausting, challenging, and at times frustrating, yet there is nowhere in the world that I would rather have been. The night before she died, she asked to go out on pass from the hospital so that she could see her animals at the farm and get snow cones. Friends and family gathered at her house on that hot July evening, and there were snow cones for everyone. She returned to the hospital near midnight, in pain and exhausted, but happy. She died quietly the next day. I wept with the family and helped them make funeral arrangements. I watched as the nurses lifted her lifeless hand to make a thumbprint for a keepsake medallion to give to her devastated parents and young boyfriend. We ate snow cones at her funeral. Continuing to foster relationships with families after the death of their child can be healing for both families and the care team. One of the ways that our program supports grieving families is to remember their child with an engraved brick, placed in the “Angel of Hope” garden in our community. A bronze statue of an angel stands just yards from Lake Superior, surrounded by flowers and encircled by a brick path. Names of children, quotes, or sayings are JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 33 NUMBER 25 SEPTEMBER 1 2015