Disco Ball (Story 1)

By Jessica Shand, MD

The story I want to share is about a truly extraordinary young man we treated for a stubborn type of blood cancer called acute myeloid leukemia, or AML. He was a vibrant, athletic teenager with an impeccable sense of humor and the ability to find something funny in even the darkest of places. The first thing many people noticed when they met him was the most unruly, vivacious head of hair—which grew back even wilder after each cycle of chemotherapy. It was the truest expression of his personality, of teenage rebellion, and of life itself.

Jessica Shand, MD

This young man came from a tiny Erie Canal town in Western New York, where everyone knows one another, and was the only child of two incredibly kind and giving parents. Everyone in their town had a story about something kind or generous one of his parents (usually both) had done. Because AML therapy requires consecutive cycles of very intense chemotherapy, he and his parents spent a lot of time on our unit—which slowly became an extension of their close-knit community. And like any formidable disease with even more formidable therapy, there were ups and downs and everything in between.

One morning, we began rounds in the usual way—prioritizing those patients who had concerning overnight events that needed more immediate attention. The young man was experiencing the telltale early signs of a serious, invasive infection and would likely require multiple transfusions. The possibility of ICU transfer loomed on the horizon. Instinctively, I had reviewed his clinical data before leaving my house early that morning, already preparing to choreograph that delicate dance of balancing treatment with side effects, fear with real-time data, and hope with reality. “Let’s round on him first,” I told my rather large team, “and share the plan as we know it, even if it isn’t perfect yet. He’s been there many times before, and he probably already knows.”

Rounds began with the team gathered around the bed. His parents glanced knowingly at me from their minimally comfortable window seat. He was becoming more alert and clearly noticed the concern on everyone’s faces. A few moments after our resident physician began reciting the overnight data, however, he slipped a light-up, rotating disco ball from under his sheet—never breaking eye contact with the team. As he surreptitiously pressed the “ON” button, the ball started to spin and blink, casting a kaleidoscope of colors around the ceiling, the floor, and—my personal favorite—everyone’s faces. In that moment, there was nothing we could do but smile and laugh together at the profound beauty and togetherness of the moment. And, of course, admire his award-winning comedic timing.

The disco ball became the stuff of legend on our unit—second only to his singular love of Cheez-Its and the value-sized boxes of them that would get delivered to the unit in advance of his scheduled chemotherapy admissions. He was eventually appointed “King of 7 North” and voted most likely to win at overnight Nerf gun wars. He was also most likely to break our hearts as we laughed through the tears and were reminded that we all shared this strange, beautiful extreme of the human experience where grief, humor, and fear all converge. He died just a few months shy of his high school graduation.

Some might ask—“Do you think he really understood how serious his illness was?” Although I will never know for sure, my answer has always been a resounding “Without question.” He was the one living through the nausea, the mouth sores, and the hair loss— quietly watching his parents for tiny, perceptible changes in their demeanor, seeking truth in the traces of dried tears that stained their sleep-deprived faces. As much as young adults look to their families for cues, they also seek to reassure them, to disarm them, and to give them permission to laugh and grieve in their own way. The disco ball was his way of shining light in a dark place—of telling us all that even though it might not be OK, it was still going to be OK. When caring for seriously ill children, grief and joy are not opposites and often exist together. The disco ball made that truth easier to understand.

I think anybody who cares for children and families on the cancer journey knows that young people tend to bring their whole selves into a situation. They tend to find joy and irreverence in places that we, as adults, struggle to see. My first piece of advice to learners on the pediatric oncology unit was always that it is OK to cry, but it is equally OK to laugh. This vibrant, athletic teenager with a keen sense of humor wrote us an instruction book for how to live, even in the most difficult and painful of times. Each piece of his story shone through, like those dozens of tiny, flashing colored lights, creating a whole that was more than just the people in the room or the medical plan of the day. He taught us that we can grieve the unfairness of it all while embracing the profound gift that his life carried. Armed with a disco ball, he helped us understand that hope is a participatory act.

Physicians are often taught that there is a glass wall of equanimity that we must keep between ourselves and patients and families—for everyone’s sake. But in my little corner of the world, where logic often gets turned upside down, I will forever be grateful for those colored lights that shone through that wall. When a parent looks you straight in the eye and asks “How do I make sense out of this? How can I go on living without my only son?” I would say that is not a time for walls.