Stand and Wait
Authors: George F. Blackall
Journal: Journal of Clinical Oncology (2010)

Casey had a gift for raising the roof. I did not realize that the first time I met him on a hot and sticky Friday afternoon in a busy urban hospital, but I would soon find out. Casey (names and places have been altered to protect the privacy of the patient) was a 14-year-old boy who had black, curly hair, pale skin, and a broad smile. Previously healthy, he had started to feel lethargic two days earlier, and by the time he had arrived at the hospital, he was experiencing acute liver failure. As part of his liver failure, he was experiencing hepatic encephalopathy, which rendered him psychotic. Casey’s parents were lovely, hardworking people who were scared to death. Their son was mumbling unintelligible things, and they were in a bustling children’s hospital with a lot of doctors and nurses with serious expressions on their faces scurrying in and out of their son’s room. As a newly graduated psychologist, my job that afternoon was unclear other than to introduce myself to Casey’s parents, offer a sympathetic ear to their fears, and hope that Casey would get a new liver soon. Casey was placed on the liver transplant list, and miraculously, he received an organ that night. His surgery went well, and by Monday morning, he had been transferred out of the intensive care unit (ICU) to a surgical bed on the floor. I had received a called at 11:00 AM from his nurses, who were distressed because Casey was swearing and had threatened to throw a telephone at them. They wanted a psychologist to calm him down. I was not sure that I could, but I went anyway. Before entering Casey’s room, I read his chart and noticed that an order to decrease his morphine by a considerable amount had been written early that morning. Thinking little about that, I went in and introduced myself to Casey. He grunted and went back to watching TV. After a few minutes of trying to make small talk, I finally asked Casey whether he was in pain. He glared at me, lifted up his hospital gown to reveal an impressive horseshoeshaped incision, pointed to his wound, and screamed, “Yes!” I told him I would try to help. Then I left his room and called the surgical resident. The resident explained that Casey had reported little pain that morning, so they had decided to decrease his morphine. The resident arrived in his room a short while later and increased his analgesic. Soon, Casey was comfortable. I was starting to feel like I could actually help the kid. The rest of his hospitalization was essentially uneventful. Although he no longer screamed at his nurses, he did annoy them with sexually provocative comments and acerbic observations (ie, “You didn’t actually pay for that haircut, did you?”). He would also frequently leave the floor and not tell anyone where he was going. Although he drove his caregivers a bit crazy, he was endearing in an adolescent sort of way. After several months of doing well with his new liver, Casey arrived in the clinic one day with a large golf ball–sized lump in his neck. There was a collective gasp throughout the clinic as staff realized what the lump likely meant. After a series of exams and tests, Casey was diagnosed with posttransplant lymphoproliferative disease. With a grim prognosis, he started chemotherapy. During that period, I spent more time with Casey and his family as they tried to absorb yet another unforeseen and penetrating blow. Yet despite the seriousness of the new setback, Casey and his family approached the situation as optimistically as they could, hoping for a miracle. That hope was short-lived. One Saturday morning as he was being wheeled down the hall for magnetic resonance imaging, Casey experienced cardiac arrest. He was revived, but there was significant damage to his brain. By Monday morning, it was clear that he would not survive. When his parents were told that his brain was too injured to recover, his parents were given the option of removing life-sustaining interventions. They were gracious in their grief and decided to withdraw support, but they asked whether they could have some time to gather family and friends to say good-bye to Casey. I waited with them, spending most of that day either by Casey’s bedside or out on the street where his parents would go for a smoke. Through idle chitchat about the weather, the Yankees, and traffic, we moved from initial awkwardness to being relaxed and connected. As we relaxed, we laughed about JOURNAL OF CLINICAL ONCOLOGY T H E A R T O F O N C O L O G Y