The long-anticipated month of September has finally arrived: it’s National Childhood Cancer Awareness Month.
President Obama issued a proclamation in honor of this occasion, recognizing that this is the time to “remember all those whose lives were cut short by pediatric cancer, to recognize the loved ones who know too well the pain it causes, and to support every child and every family battling cancer each day.”
Moreover, the proclamation acknowledges the multidimensional approach needed for childhood cancer awareness: “We join with their loved ones and the researchers, health care providers, and advocates who support them as we work toward a tomorrow where all children are able to pursue their full measure of happiness without the burden of cancer.”
As I have become more involved in the cause of childhood cancer, people have asked me why. And I think it’s important for me to be upfront about my background. No, I am not a childhood cancer survivor, nor do I have any close friends or family that have gone through the experience. But I believe that you don’t have to be personally touched by childhood cancer to care.
Volunteering with pediatric oncology patients at C.S. Mott Children’s Hospital was all it took to expose me to this different world. For me, getting to know these children and their families and witnessing how cancer permeated their lives made me determined to do something.
While I currently aspire to be a pediatric oncologist and to dedicate my career to these children, I also realize that a lot can change throughout the course of my medical education. Nevertheless, I know that childhood cancer will always be a cause that I hold dear to my heart– I know that I will continue to support these children and their families in whatever capacity that I can.
That’s why I am a firm believer in the Childhood Cancer Awareness Month campaign motto at C.S. Mott Children’s Hospital:
After reading and reviewing the illness narrative ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories, I feel that I need to explain another facet of this book. This book has also entirely revolutionized my own research.
When I found out that this book had published, I was shocked to see this publication of illness narratives come to fruition right here at the University of Michigan. I couldn’t help but wonder: would it be possible to do the same with the narratives that the pediatric oncology patients create? After all, one of the main motivations for conducting this research was because of the void in published illness narratives by children themselves. So why not fill that void?
That’s when I got in touch with MPublishing and explained to them my research project and why this was important to me. I wanted the children participating in my research to really gain something meaningful from being a part of the study; I wanted them to be proud of their narrative. I hope that children will find fulfillment in sharing their stories with the health professionals that treat them, the loved ones that care for them, and all the other kids with cancer.
MPublishing agreed, and I couldn’t be happier. We’ll have to wait and see how everything turns out, but the plan is to have publishing be a separate opportunity from the research component of my project. While I will study these narratives anonymously, children can choose how much of their identity they would like to disclose in the publication.
At the end of it all, the children will be able to hold this book in their hands, to flip through the pages, and find their own words. They will be able to share their story with the world.
For months, I have been eager to read ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories. I’ve heard so much about this book through working at the UM Medical School, and it’s been exciting to watch UM transform these works into a published creation that gives ICD patients a voice.
ICD stands for Implantable Cardioverter Defibrillator. “It is a device smaller than a deck of cards that is implanted under the skin to treat life-threatening heart rhythms that can lead to sudden cardiac arrest” (McFarland: Pelosi i). While the ICD certainly saves lives, policing the heart’s every heartbeat, it brings with challenges of its own. This is what the patients and families featured in the ICD Connection book aim to illuminate.
The idea behind this book came from the Young ICD Connection event, which brings together people from around the country who are living life with an ICD. This event inspired Helen McFarland, a nurse who has worked with ICD patients for years, to create this compilation of stories. She was eager to explore the psychological and social side effects of the ICD, to enable patients and families to tell their stories to have their voice be heard.
I must say, this collection has been one of my favorite set of illness narratives. The honesty and authenticity of these stories and the genuine intentions behind writing them shine through, empowering this collection to have resounding effects on any reader. Each short story was unique and moving, and the writers brought incredible insight about their own lives and the ways that the ICD had affected them from within. These stories reflected the perspectives of boys and girls, men and women, dads, husbands, and daughters. I loved the eclectic selection of experiences that all seemed to supplement each other but also stand apart. For example, the pairing of Erika’s perspective of having an ICD with Bryan, her husband’s perspective of her ICD, was interesting to explore.
Amongst many powerful ideas, I found one statement that seemed to reflect the foundation behind this book. “Emotional roller coasters are a very normal part of any health challenge, and every patient has a right to feel however he or she feels and work through those emotions in whatever way he or she needs to. No one is the same, and no one deals with anything exactly the same” (McFarland: Lisa 85-86).