Monthly Archives: November 2014

Chronicling Childhood Cancer: Ethical Considerations in Self-publishing the Work of Others

To publish a book: a dream held by many, achieved by few.

Until now. Self-publishing has revolutionized the world of books, forever altering what it means to be a published author. But what happens when an author is actually an editor responsible for a collection of works, none of which are her own?

This September, Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer was published. Edited by me, Trisha Paul, this collection of works consists of narratives collected from my research with pediatric oncology patients at C.S. Mott Children’s Hospital.

There are a lot of questions that I grappled with throughout the publication process, and they left me filled with both excitement and anxiety. What does it mean to self-publish a book that is entirely based on the contributions of others? Perhaps nothing, perhaps something. For me, it was important from the start that the focus remain on the children and teens with cancer.

Yet as the editor of this collection and the collector of these stories, I inevitably had the responsibility of making decisions regarding this publication. How much did I want to disclose about myself as the editor? If I was not including any images of the child and teen authors, was I comfortable including my own picture? How could I adequately summarize where this idea came from in the Preface without dwelling too much on my personal story?

Throughout the process, I kept wondering whether I was overthinking these seemingly minor details, but I always found myself agreeing with my initial concerns. These questions may seem superfluous or irrelevant, but they are the kind of concerns that I have contemplated from the start. Although the book may be attributed to me as the editor, I believe that it is not I who is being published but rather each of these contributing children. By making these important ethical considerations, I was able to achieve my ultimate goal: to maintain the focus on these young child and teen authors.

Leave a comment

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Chronicling Childhood Cancer: About the Charities

All proceeds from the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer will support the following programs at C.S. Mott Children’s Hospital. These programs are near and dear to me, and I believe that they represent the multiple dimensions that we must address within the cause of childhood cancer:

Fifty percent benefitting the Block Out Cancer campaign for pediatric cancer research at the University of Michigan.

“C.S. Mott Children’s Hospital is home to the largest cutting-edge pediatric research effort in the state of Michigan. We believe every child deserves a cure, and we have established the Center for Childhood Cancer to help us find different, better ways to cure childhood cancers.”

“Our teams are conducting basic science, translational research and clinical research with a goal of finding new cures and better ways to deliver current treatments. Our research focus spans from early diagnosis and cancer prevention to developing less toxic treatments and exploring expanding horizons in life-long cancer survivorship so we can understand and improve the long-term effects of cancer therapies.”

Fifty percent benefitting the Child and Family Life Program at C.S. Mott Children’s Hospital.

“The Child and Family Life team at C.S. Mott Children’s Hospital is made up of trained professionals with expertise in helping reduce the stress and anxiety associated with hospitalization and illness.”

“Our Child and Family Life team members work together with doctors, nurses, social workers and others throughout the hospital to meet the emotional, developmental, and cultural needs of children and their families. Some of the special services we offer for patients and families include:

  • Procedure preparation medical play and support
  • Activity centers
  • Hospital school program
  • Art therapy
  • Music therapy”

Leave a comment

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Chronicling Childhood Cancer- About the Book Cover

Unknown

Cover Design by Rohan Paul (Copyright: All Rights Reserved)

The word cancer comes from the Greek word karkinos for crab. Cancer has been around for centuries; Hippocrates coined this term in the BC years. Some say that how the disease spreads through finger-like projections evokes the symbolic shape of the crab and its claws. Others claim that malignant tumors feel hard like a crab’s shell, or that the pain of malignant cancer is reminiscent of a crab’s sharp pinch. Regardless of what Hippocrates might have thought when he named the disease, the name stuck (Dr. Howard Markel, The Origin of the Word ‘Cancer’).

Because we tend to think of cancer as a disease for adults and the elderly, the label of childhood cancer can be particularly jarring. This crab-shaped sand toy evokes the disease of cancer while simultaneously reminding us of the purity of the beach, the innocence of youth, and the simple bliss we often associate with childhood.

In part, this cover design was also inspired by the song Sandcastles by Zach Sobiech (which I choreographed and danced to in the past). It is incredible to me just how much this teenager with osteosarcoma’s music has stuck with me.

2 Comments

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative