• © 2012 by American Society of Clinical Oncology

How They Do This

The first time I delivered a new diagnosis of cancer to a child's family, I was a third-year medical student. My attending physician gave me the opportunity to lead the conversation because he had learned that I aspired to be a pediatric oncologist. He also suggested that my experiences as a new mother might somehow help me relate to the patient's parents. “Use your own life experiences and perspectives to help support them,” he instructed.

Before the discussion, I memorized numerous phrases and factoids: numbers and percentages, types of chemotherapy, adverse effects of treatment, words of encouragement. But as I sat in the patient's room and parroted this information to the two people quietly crying in front of me, I could think of only one thing: The girl with cancer was the same age as my son.

That evening, I went home and crawled into bed with my little boy. I held him while he slept, breathed in his baby-shampoo scent, and recalled my conversation earlier in the day. Despite my careful preparation, when it had come time to actually break the bad news, I had felt utterly unprepared. I may have been a mother, but I certainly had no life experiences or perspectives to help support those devastated parents. I could not fathom hearing that my own previously healthy child now had any life-threatening illness, let alone cancer. That he would suffer from his treatment. That he would be in the hospital for extended periods of time. That I or my husband would have to sacrifice some or all of our professional lives to meet his new needs. That some of those needs could go unmet, despite our best attempts. That even if he survived, he would be a different kid afterward. That his diagnosis would forever change the visions I had for him and for our family. That I would feel powerless, scared, and sick with worry.

At the same time, in that quiet moment, I also felt gratitude (tinged with guilt) at having a healthy child. And although I could not begin to truly understand what those parents were experiencing, I could still sympathize. After all, are we not all as parents constantly living with some degree of terror that some day, the same could happen to our child?

“How?” I wondered. “How will they do this?”

I was a first-year pediatric oncology fellow when I heard similar words from a patient's father. His daughter's acute myeloid leukemia persisted through three attempts at induction chemotherapy. There were no more curative treatment options. “I am her dad,” he said, “and my job is to keep her safe and happy. She was supposed to outlive me. How do I do this?”

Again, I had no answers. Again, I looked for solace in my own children (by that time, there were children at my home, not just a child). This time, I went into their room alone. I sat on the bed and stared at Lego toys scattered on the floor and at the brightly colored posters on the walls, and tried to somehow imagine the emptiness, the longing, I would feel if I could never hold one of my children again—if I could never feel their little arms around my own neck, hear their laughter, or meet the person they would someday grow up to be.

As parents, our deepest instinct is to protect and nurture our children. Such aspirations may feel impossible in the face of an illness that not only threatens a child's life, but also his or her livelihood. Indeed, being the parent of a child with cancer is profoundly distressing,¹ not only because parents watch their child's prolonged suffering from therapy, but also because even if the child survives, they face life-altering changes that may persist long after the cancer experience is over.² Studies have also demonstrated that the grief of bereaved parents is more intense than that of a bereaved spouse or of an adult who loses his or her parents,³ in part because outliving one's child disrupts the expected natural order,⁴ and in part because parents whose children die often feel that they somehow failed in their most basic parental obligation.⁵ Nevertheless, most parents of children with cancer demonstrate remarkable resilience and ability to adapt to the new circumstances.⁶

Several months after his daughter's death as a result of acute myeloid leukemia, my patient's father came back to our clinic to visit. He was struggling but was starting to rebuild his life, to reframe his family structure and his sense of purpose. “How are you doing this?” I asked.

He shared with me, “Nothing will ever be as stressful. Even tiny things are still difficult. But I promised her, my family, myself, that I wouldn't waste this pain.”

I have since had similar conversations with other bereaved parents. I hope they can teach me something about resilience. Not only do I want to help other parents whom I have yet to meet, but also, surrounded daily by children with cancer, I still struggle with my own worries.

Many parents who have experienced loss cite their child's legacy as a source of comfort. “Even though is still hurts,” one mother told me after her daughter's death, “living my life with joy is what she would want me to do. I learned that life is short, and I appreciate everything around me more now. I take nothing for granted. To love others, to help others, to serve others. That will be her legacy… and now my own.”

“The veil of ‘it won't happen to me' was lifted,” another parent explained. “The world… life… can be a scary place. But, it is more precious to me now. I want to fully live my life by honoring her. So now, I do things that she would want. That she didn't get to do. I want to support those things that were important to her.”

It has become my practice to periodically ask patients and families, “How are you doing this?” Those who are coping well often describe their hope, their optimism, and what they are learning about their own strength of character. They point to the importance of family and community support and of spirituality. They cite the help from medical teams and supportive care services—from social workers, chaplains, palliative care specialists, psychologists and psychiatrists, and child life specialists. They highlight a sense of new meaning and growth. “I wouldn't wish this experience on anybody,” one father told me. “But when I look back, I have learned something about life. About what really matters.”

Others, however, are struggling. The factors that enable some caregivers to be resilient while others have greater difficulty coping are unclear. They are likely unique to each person and circumstance. Although we struggle to identify those at risk for poor psychosocial outcomes, we can also learn from those who survive and grow from the experience. As oncologists, we see many caregivers rise to what seems at first like an impossible set of challenges.

Additionally, health care team members are not just professionals with a role to play but are also parents, siblings, spouses, sons, daughters, and friends who can provide other mechanisms of support and compassion. We may not understand what it feels like to have a beloved child be diagnosed with cancer, but we can still support parents as they try to protect their children and minimize suffering, recognizing that they may feel powerless.

Although I still recite memorized phrases and factoids, I now understand that the parents of my patients are teaching me. I talk to them about changing goals of therapy, and they show me how to redefine hope and concepts of protection. I speak of chemotherapy and prognosis, and they highlight time spent well and life lived without regret. Put simply, they demonstrate the incredible strength of the human spirit.

Recently, I delivered my first new diagnosis talk as an attending physician. My patient was a 14-year-old girl with rhabdomyosarcoma. Her mother had recently died after her own difficult and painful battle with cancer. After our conversation, my patient excused herself while I stayed in the room with her father. “I thought I had learned how to do this,” he said. “I thought I had done my share of cancer. Now, I have to learn all over again. How will I do this?”

“How did you do it the first time?” I asked.

“Well,” he said, after a moment reflection, “at first, it was about getting through the day. Then living… just living normally. Now, it is about appreciation, memory, honor. And maybe that's how we will survive. I guess we should start with that.”

• Received August 2, 2012.
• Accepted August 21, 2012.