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Cancer Narratives written by Children: A new study at Mott Children’s Hospital

trisha-paulby Trisha Paul, aspiring Pediatric Oncologist

For 5 years, I have spent my Friday evenings volunteering at Mott Children’s Hospital. In a playroom full of toys and games, pediatric oncology patients introduced me to cancer’s disruptive nature: the imprisonment of IV poles, the pains of pokes, the side effects of chemotherapy. As I interacted with patients and their families, I became increasingly intrigued by how this experience of cancer affects a child. I wondered how children understand and cope with this mysterious, complex illness.

It was exciting to learn more about medicine at the University of Michigan and spend more time getting to know the pediatric oncology patients at Mott. In studying literature, I realized that medicine is all about people and their personal stories. The stories of patients, the stories of families, the stories of health care providers.

 

We hear stories about kids with cancer all the time. But these stories are rarely ever told by the children themselves. And as someone interested in understanding how these children cope with cancer, I became determined to fill this void: to let them tell their own stories.

 

Nine months later, my idea has become a reality. Pediatric oncology patients at Mott are talking, writing, drawing, even just thinking about their experiences with cancer in ways that many never have. These children are confronting their cancer with words, colored markers, and blank storybooks. They are choosing to express themselves in the ways they are most comfortable. They even get to keep the stories that they create.

 

Perhaps what has been the greatest motivation for most is the opportunity to help other kids with cancer: to contribute to a book publication of stories about the childhood cancer experience. I am excited to give these children the chance to share their story with health professionals, loved ones, and other kids with cancer. Children have expressed an overwhelming desire to support other kids through the cancer experience, to provide the insight only they can.

 

With the support of Dr. Rajen Mody, a Pediatric Oncologist and the Principal Investigator of this study, and Professor Melanie Yergeau, my English Department advisor, this project has grown into so much more than I could ever have hoped. From physicians to nurses, social workers to child life specialists, this project has been a united effort supported by the entire Division of Pediatrics Hematology/Oncology. By giving children the opportunity to express themselves, we can help them come to terms with their cancer, and we can better understand their experiences.

 

It has been an honor to give these children the chance to have their voice heard, to listen as they speak through different mediums. These narratives illuminate the intricacies of childhood cancer, the invisible symptoms that may remain hidden beneath the surface, and I hope that they will be a resource for all those involved in the cause of childhood cancer. Only in appreciating these unique experiences, I believe, can we work together to treat the many facets of cancer.

 

As an aspiring Pediatric Oncologist, I want to dedicate my life to these children, to their battles with cancer. The people at Mott Children’s Hospital— from the physicians, nurses, and child life specialists to the parents, siblings, and patients—have all inspired me to cherish these children and to devote myself to their cause. By giving these children the chance to tell their stories, we can listen and learn. And someday, I hope that these stories will help us to better confront childhood cancer with compassion.

 


 

trisha-paul2Trisha Paul is a senior at the University of Michigan, majoring in English with minors in Biochemistry and Medical Anthropology. Trisha will be attending the University of Michigan Medical School in the fall and, largely because of her experiences at C.S. Mott Children’s Hospital, she hopes to become a pediatric oncologist.

 

 

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