Tag Archives: childhood cancer

Helping: A podcast interview

About a year ago, I had the opportunity to share my journey into medicine through Inside Stories. Now, after finishing my first year of medical school, it was a pleasure to chat with  J.J. Bouchard, a Certified Child Life Specialist and Certified Therapeutic Recreation Specialist at C.S. Mott Children’s Hospital, about my experiences helping others.

Helping: Conversations with Child Life Specialists and Other Helper Professionals is a podcast that features people who have dedicated their lives to helping others. I was truly honored to participate in this podcast project and to have a chance to reflect on my experiences as a helper and what being a helper means to me. In this podcast, I shared some of my experiences with the Chronicling Childhood Cancer narrative project and the book, as well as the current volunteer work that I’ve become involved in as a medical student.

J.J. was instrumental in helping me with my research project (as you’ll hear about if you listen to the podcast!), and his podcasts provide great insight into the stories of people who devote themselves to helping others. It is incredible to me the variety of ways that people choose to make a difference in the lives of others, and listening to these podcasts has reminded me that there is so much that we can learn from each other.

Check out the podcast here, and subscribe to hear more from other helper professionals!

http://www.helpingpodcast.com/?page_id=10

Leave a comment

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

An iBook! Chronicling Childhood Cancer now available for download

If you walk through the infusion clinic at Mott Children’s Hospital, you’ll notice a lot of patients have one thing in their hands: iPads! That’s why I’m excited to announce that Chronicling Childhood Cancer has now been released as an iBook, available for download on any iPad or Mac laptop.

With how widespread iPads are becoming for patients these days, I hope that these new version of the book will be more accessible and able to reach a broader audience. At the very least, I want this book to be available to patients and their families waiting in hospitals who may be interested in perusing it. And as always, all proceeds are donated: 50% benefitting the Block Out Cancer campaign for pediatric cancer research at the University of Michigan, and 50% benefitting the Child and Family Life Program at C.S. Mott Children’s Hospital.

It continues to amaze me how much this project just keeps on growing. A special thanks to Learning Design and Publishing at the University of Michigan Medical School for making this all happen, from the hard copy to the electronic version. I can’t wait to see what’s next!

 

Chronicling Childhood Cancer on iTunes

Leave a comment

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

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

[Inside Stories] Trisha

Although I’ve personally been drawn to the stories of people with illness and disability, I also realize that stories in medicine arise from both sides of health care. Albeit it was admittedly strange (given that I am used to being a listener to these stories), I was excited to have the opportunity to tell my own story about my experiences as a medical student and someday health professional.

Inside Stories is an oral narratives project which invites medical students to share their experiences in medical school in the form of brief podcasts published and archived on in-Training, an online medical student community.  The curator of these stories, Annie Robinson, makes space for medical students across the country to share experiences that they may not otherwise have the opportunity to share. Moreover, it seems to me as though these stories can serve a similar function as do many online illness narratives by bridging together medical students. These exemplify how stories can be used to create a community, to connect different people who may be going through similar situations in their medical training.

Take a listen! My story about medicine and about my childhood cancer narrative research.

Leave a comment

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

Thinking about the Chronicling Childhood Cancer book reading/signing event… Still

I have to apologize for the blog silence. Sometimes life gets in the way of things, no matter how important they may be to me.

Three weeks ago, it was my pleasure to hold a book reading/signing event for the recently published book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer. I had approached Literati Bookstore in downtown Ann Arbor on a whim, thinking that if there was any bookstore who may support this local book publication of stories by youth with childhood cancer, it was them.

Before I had even finished telling them the whole story, they had said “of course.” They kindly invited me to host an event to launch the book, to get the word out about it and raise more awareness about the cause of childhood cancer. They were so supportive about this project that they even wanted to donate 100% of the book sales from the event: as with the book, 50% of the donations would go to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at the University of Michigan C.S. Mott Children’s Hospital.

I tossed around a number of ideas about what to do for the event, ultimately deciding that it would be best to let the children share their stories themselves. After I contacted all the young authors, we were fortunate enough to have three join us at the event (one other author realized that he had too much math homework that day, but I reassured him that was entirely valid and it made me smile to hear that school was his excuse).

It’s hard for me to summarize what happened that night. So hard that it’s taken me weeks to find the words to write about it (somewhat) coherently. The event as a whole moved me more than I had ever anticipated.

I had certainly been nervous about the event because of how sensitive this topic of childhood cancer is. I think that in the back of my mind I feared what could happen all along and how emotional the experience of sharing their stories could be for the authors of this collection. But in reality, I hadn’t mentally prepared for it.

By its very nature, the book reading was an emotional experience for the young authors as well as the audience. It was not easy for me to watch as these teens stood under bright lights in front of a room full of people, overcome by emotion as they shared their personal and very intimate experiences with cancer. I was struck by their determination and persistence to tell their tales- it was just one example of what courage in the face of cancer looks like.

After the event, each of the authors thoroughly enjoyed signing copies of the book. Even though the event had clearly not been easy for anyone, they were all eager and excited about the prospects of doing another book reading/singing event and maybe even meeting some of the other authors.

As far as this project has come, I’ve realized that I’m not done with it now, and I probably won’t ever be. There’s just so much more that I want to do to share what these children and teens have shared with me, and I’m as determined as ever to make the most of all that this project has taught me. But I also know that I need time, and that’s ok.

To this day, I am struck by just how much this event moved me. The standing-room-only audience of friends and family, health practitioners and local strangers. The kind words of appreciation expressed by these young authors and their parents. The knowledge that all that I have put in to this research, this book, and this event has touched these teens more than I had ever realized. It was overwhelming, in the best way possible.

Literati book reading signing event- Event Plan

Literati book reading signing event- Research Overview

3 Comments

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Miscellaneous Musings, Narrative Medicine Research

[From Mott Children’s Hospital blog] Sharing the voices of children with cancer

With excerpts from the Chronicling Childhood Cancer book, this blog post was included in the C.S. Mott Children’s Hospital Hail to the Little Victors blog. I’m honored to be a part of such an important initiative; I truly believe that “everyone has a role to play to block out cancer.”

Sharing the voices of children with cancer

Leave a comment

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