“I don’t think that I have ever really spoken about my cancer this much.” —Andy, fifteen-year-old male
In a dimly lit hospital room, a fifteen-year-old adolescent paused his video games. Andy closed his eyes and told me about how it all started with a bloody nose that would not stop. He shared with me the simplicities and the intimacies of his life, speaking as if he were reliving each memory he recounted. After an hour went by and our conversation drew to a close, Andy told me candidly that he did not think he had ever really spoken about his cancer that much.
Andy was one of the first adolescents I spent time with for the purpose of my research. Our conversation was guided by my questions about his diagnosis, his time in the hospital, and his whirlwind of emotions about cancer. As we talked, I learned more about his experiences through the memories he shared, the words he stumbled over, the deep breaths he took, and the moments of silence.
When he confessed that this experience of talking about his cancer differed from any other, I was taken aback by the power of my presence. It dawned on me that such stories, told by adolescents with cancer, rarely have the space to emerge.
My research aimed to give adolescents like Andy a space to express their experiences with cancer. For more than five years, I have been volunteering with pediatric oncology patients at the University of Michigan C.S. Mott Children’s Hospital. I have been getting to know these children and adolescents not only as cancer patients but also as individuals. I have become dedicated to these youth and the cause of childhood cancer: these experiences have largely shaped my own aspirations to become a pediatric oncologist.
As I spent more time with these youth, I became increasingly curious about how children and adolescents make sense of their disease and cope with the mysterious complexity of cancer. I wondered about what emotions and feelings children and adolescents may experience, beyond their coping mechanisms and even beyond their diagnoses. I wanted to understand how cancer affected these children and adolescents, not only as patients but also as people.
Now, after months of listening to children and adolescents talk, write, and draw about their experiences with cancer, I am proud to be able to share their written and drawn works with a much broader audience. This September, in honor of Childhood Cancer Awareness Month, the collection of narratives by youth with cancer that were gathered throughout the course of my research is being published. Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer includes the stories of ten different patients, all at different places in their journeys with disease.
In a series of blog posts, I hope to elucidate the milestones of my research, the crucial moments and considerations that have transformed this project into so much more than I could ever have hoped. I will describe the original realizations that prompted this research, the importance of filling this void of literature, and the ethically complex process of publishing this collection of patient narratives. These blog posts will provide insight into the research that created this opportunity for narrative creation and, just in time for September, they will reiterate the great importance of childhood cancer awareness.
Trisha Paul is a first year medical student at the University of Michigan Medical School. Trisha graduated from the University of Michigan with a B.S. in English with Honors along with minors in
Biochemistry and Medical Anthropology. Largely because of her volunteer experiences at C.S. Mott Childrens Hospital, Trisha aspires to become a pediatric oncologist.