Category Archives: Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

These blog posts will chronicle the process of my illness narrative research. My research project, Chronicling Childhood Cancer, will explore how pediatric oncology patients express their illness through writing, speaking, or drawing.

Untold Stories, Unheard Lives: A Study of How Adolescents with Cancer Create Selfhood through Narrative

Since the upcoming release of my book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is just around the corner (8 days!)– my thesis is available at http://deepblue.lib.umich.edu/handle/2027.42/107767. It was truly an honor for me to be nominated and chosen as a recipient of the Virginia L. Voss Memorial Award for academic writing for this research.

My thesis provides more information about my research methodology as well as the scholarly relevance of these narratives. I wanted to make it available here to all those who may be interested in learning more about how these narratives were collected, what we can learn from these adolescents, and what we can do with these narratives moving forward.

Below is the abstract for my thesis:

Illness narratives, especially those about cancer, have become increasingly prevalent in recent years in an attempt to communicate experiences with illness. Yet amongst cancer narratives, experiences of childhood and adolescent cancer have largely been left untold. Stories shared about youth with cancer have mostly been written from other perspectives such as by parents, health professionals, or public relations personnel, but rarely from an adolescent’s own view. While some memoirs confront cancer retroactively, such as Lucy Grealy’s Autobiography of a Face, few or none are written by adolescents as they are currently experiencing cancer.

This thesis aims to fill the void of narratives by adolescents with cancer. Since cancer is a living reality for so many adolescents, it is troublesome that these youth have not had the opportunity to give voice to these experiences. It is problematic, I argue, not to listen to these often unspoken voices, for they can provide insight into marginal experiences as told by the ill. These narratives can reveal the subjective illness experiences of a diverse population.

My thesis explores how adolescents with cancer at the University of Michigan C.S. Mott Children’s Hospital express their experiences through writing, drawing, and speaking about cancer. I sat down with adolescent patients and asked guiding questions that they responded to through any or all of these mediums. These narratives illuminate how adolescents make sense of their cancer and treatment as well as how these understandings affect their developing sense of self.

My introduction begins by tracing the history of illness narratives and autobiographies about childhood to understand the current void, and thereby the urgency, of life writing by adolescents with cancer. In the first chapter, I delve into my research methods and the ethical concerns that arise with adolescent involvement and researcher intervention. I acknowledge how my methodological approach has in effect influenced the creation of these narratives.

Chapter two explores how adolescents define cancer and chemotherapy. While many defined cancer as a disease, elaborations often deviated to include but also challenge perceptions of cancer as an uncontrollable excess, an impairment or disability, and an evil. Many perceived chemotherapy similarly and sometimes struggled to distinguish between the two. I navigate through these blurred understandings, ultimately to recognize their implications on adolescents with cancer.

Building off these perspectives, the third chapter investigates how experiences of cancer and chemotherapy affect an adolescent’s sense of self. Narrative exposes conceptualizations of the self, specifically pertaining to the period of adolescence, the body with cancer, the self as a patient, the desire for normalcy, and the self as a social being.

In the fourth and final chapter, I expand the implications of my interactive research methodology and of these adolescent cancer narratives. I consider the broader impact my research may have on narrative studies, medicine, and the interdisciplinary fields of medical humanities and narrative medicine. Most importantly, this thesis enables adolescent agency and allows these individuals, with personal and intimate experiences of their own, to enter into the discourse that surrounds their lives.

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How to “Make-A-Wish”: Stephen’s Day as a Michigan Football Recruit

When people think about the Make-A-Wish Foundation, most people think about dying children fulfilling their last wish to go to Disneyworld. But Make-A-Wish Foundation is about so, so much more.

As a volunteer wish granter for the Make-A-Wish Foundation, I’ve had the opportunity to learn more about the organization from the inside and to understand what really goes into turning a child’s wish into reality. I firmly believe that I have the best job of all- it is my responsibility to spend time with children with life-threatening conditions and help them to realize their “one, true wish.” These wishes are about more than visiting Disneyworld but rather understanding what will bring each child the greatest joy they could ever imagine.

This past week, I was inspired to hear about an incredible wish that was close to home for me: Stephen’s wish to be recruited for the University of Michigan Football Team. Like many children, he lost his ability to play football when he was diagnosed with cancer. For his wish, Stephen got to meet his favorite football player, Michigan’s football coach, and even the football team in the Big House.

The only way to appreciate the great work of the Make-A-Wish Foundation is to witness his wish for yourself:

http://frontrow.espn.go.com/2014/07/wish/

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

The Fault in Our Stars: Fictionalizing the Realities of Childhood Cancer

“This is not so much an author’s note as an author’s reminder of what was printed in small type a few pages ago: This book is a work of fiction. I made it up.”

-John Green, The Fault in Our Stars

The author’s note quoted above is one of my favorite pages in John Green’s The Fault in Our Stars.

When I first heard about The Fault in Our Stars, a book about childhood cancer that was also soon-to-be a movie, my initial reactions were as follows. Surprise, that the often hidden world of childhood cancer was being so prominently featured in a bestseller. Wariness, that this book which was quickly becoming a sensation itself would similarly sensationalize the lives of those with childhood cancer.

Reading the Author’s Note both confirmed and calmed my fears. I applauded Green’s straightforward commitment to the fictionality of the novel, for it cautions the reader not to use this story to make assumptions about childhood cancer. At the same time, it made me curious about his choice to use cancer as an intriguing literary device and how he would portray this reality, however fictionalized.

I found myself scrutinizing this book, expecting it to portray cancer in some false light that would spur further misunderstandings and stereotypes. But I have to say, after reading TFIOS, I was impressed by the power of Green’s language. The adolescent perspective, at times cynical and abrasively honest, allows him to successfully make real this foreign world of cancer. From the “Cancer Perks” that accompany a diagnosis to illness-catalyzed Encouragements, I thought that the story was overall written with great precision.

Interestingly enough, this was one of the first times where I preferred the movie adaptation to the book. To me, the witty dialogue and the comic relief interspersed amongst heartfelt emotion really came to life through the camera in a way that I didn’t quite feel when reading the book. While the book sometimes felt a bit bogged down by philosophical contemplations and at other times almost too simple, the film adaptation struck a balance between both the unbearable lightness and heaviness of being (a phrase I’m borrowing from Milan Kundera’s book)

Some critics have looked down upon this work as yet another in a new genre of “sick-lit” full of terminal illness and the devastations caused by disease. This idea warrants an entire post of its own (coming soon). I am glad that the TFIOS sensation is raising awareness of childhood cancer, but I can only hope that people take Green’s Author’s Note to heart.

“Neither novels nor their readers benefit from attempts to divine whether any facts hide inside a story. Such efforts attach the very idea that made-up stories can matter, which is sort of the foundational assumption of our species.”

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A Dance to Zach Sobiech’s Sandcastles: Dedicated to Youth with Cancer

Because dance is one way that I express myself, I’ve been wanting to dedicate a dance to the youth with cancer that I have spent time with over the years.

When I learned about Zach Sobiech, a teenager with osteosarcoma, his incredible musical talent resonated with me: the lyrics he wrote and the songs he sang expressed his inspiring attitude amidst his experiences with cancer. With subtle undertones of cancer, his music is simple yet powerful. One of my favorite songs by Zach is Sandcastles: a melodious, heartfelt duet with Sammy Brown about a far off land “where no one gets hurt and no one dies.”

Zach died one year ago today. My hope is that my choreography and performance of a dance to Sandcastles, speaks for itself.

Dedicated to youth with cancer.

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Excited for The Examined Life conference: Writing, Humanities, and the Art of Medicine

When I attended the WMU Medical Humanities Conference last fall, I heard about an upcoming conference called The Examined Life: Writing, Humanities, and the Art of Medicine. And now, I’m fortunate enough to not only be attending this conference but also be presenting about my childhood cancer narrative research!

The Examined Life conference explores “the links between the science of medicine and the art of writing.” This conference seems to align perfectly with my own dual interests in medicine and literature. I think that participating in this conference will help me to figure out how I can maintain and balance both passions throughout my career, and I’m looking forward to meeting others in these fields with their own insight and experience to share.

At the Examined Life conference just one week from now, I’ll be doing something a bit different. In writing my Honors English thesis over the course of this year, I realized just how crucial my methodology has been in shaping the adolescent cancer narratives that I wanted to analyze. As a result, rather than just presenting about my research, I’ll be leading a discussion forum this time. Specifically, we will be discussing the ethics inherent in my methodology and thoughts that may be sparked from encountering these narratives. I’m curious, nervous, and excited to see what comes out of this discussion. I believe that these conversations will give me a lot to think about as I look towards further developing my honors thesis.

Here’s the abstract for my discussion forum:

Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

I’ve never been to Iowa! I’m excited.

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3/24/14: The day I turned in my Honors English Thesis

To be honest, this is probably the most important thing that I’ve done in my life.

My Honors English thesis

I know it sounds dramatic, but I can’t help but think that it’s true. I’ve been excited about writing a thesis since coming to college. I had no idea what it would be about, but I loved the idea of turning my own thoughts into something new. My English teacher once told me that I was a seeker; I enjoy turning to literature for answers and embracing its ambiguity. And in many ways, that is what I’ve done in my Honors English thesis.

It’s hard for me to wrap my mind around just how much of myself I’ve devoted to this research. But in many ways, this thesis is the culminating creation of my entire undergraduate education here at Michigan and more. Volunteering with pediatric oncology patients in high school initially piqued my interest; now, I’ve become dedicated to hopefully getting involved in childhood cancer as a physician. I needed to do this research: for these individuals with cancer who have had such an impact on my life but also for me, as a way of making sense of these unfathomable lives.

These final days have also been a time for remembering how fortunate I am to have so many people in my life supporting me. A close friend willingly contributed an extra set of eyes and an additional brain towards the editing process. From front to back, my mom read my entire thesis for typos. My dad morally supported me in the final stretch, and even my brother helped me to perfect the images. It’s been humbling to watch my loved ones step aside from their lives and devote their time to my own project.

Throughout the process, I’ve said that all I wanted was to be able to turn my thesis in knowing that I did everything I could and that I personally am happy with it. By my own standards, I believe that I’ve successfully accomplished this goal, and I couldn’t be more content.

If nothing else, the fact that I found myself eager to write this blog post and excited to dive into John Green’s  The Fault in Our Stars to celebrate  says something to me. I know that in studying literature, I’ve truly been doing something I love.

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Being Thankful for Cancer: A Huffington Post article

This Huffington Post article caught my eye:

Dear Cancer, This Is How You’ve Made Me Thankful.

Zoe Lintzers reflects on how she has observed the experiences of loved ones with cancer, and how cancer has helped her to better appreciate the simple pleasures of life: She writes perceptively about these experiences and her own realizations, presenting a convincing argument for what others can learn from disease and human suffering. Is illness something we should be thankful for? Despite the revelations that it may catalyze, does it demand our gratitude?

It was sometimes hard for me to look beyond some of her diction choices, though. She mentions the aunts she lost to cancer. Then she proceeds to tell of how  “[t]here are the brave others in my family who have been diagnosed in the past six years and are in remission, having triumphed over a disease that makes our eyes widen and our hearts crumble upon hearing that initial diagnosis. But they’ve prevailed and, to me, are the strongest people I know.”

But what does this mean for those whose lives were lost to cancer? Were they not brave? Just because they were unable to successfully triumph over their disease, does that imply something about their strength?

I’m sure that these were not intentional questions that Lintzers meant to imply. But sometimes I feel that this can be the danger of using what Arthur Frank called “the triumph narrative.” It’s interesting to me how prevalent this language is when it comes to communicating illness experiences. Especially with cancer, a disease in which war is literally waged against one’s body. But there needs to be an increased awareness of the latent effects of the triumph narrative.

Lintzers does, however, successfully portray her personal experiences with cancer as both a painful experience but also an enlightening one: “Cancer made me see that this is what it — life — is all about.”

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‘Brave’ Pediatric Oncology Patients at UMinnessota’s Amplatz Children’s Hospital

“Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave”

The lyrics of Sara Bareilles’ song Brave struck me. They reminded me of the purpose behind my research and my Honors English thesis: to give children and adolescents a chance to tell their own stories. And, to give all those involved the opportunity to listen, to better understand how these children and adolescents cope with the complex, mysterious illness of cancer. In my mind, the bravery arises in how children are talking and writing about their intimate experiences with cancer.

From Stronger to Roar and now Brave, my emotions are mixed about these charged music videos about the sphere of pediatric oncology. While the Stronger and Roar videos ask for donations to support childhood cancer research in the caption, this video of Brave only links to additional information about the programs offered. I wonder, how does the purpose behind these videos affect how we should respond to them?

I have to say, one of the best things about these music videos is that they counter common misconceptions about childhood cancer. Every time I tell someone that I want to be a pediatric oncologist, people stare at me and say, “Oh. That’s so depressing” or “That’s so sad!”. I’m not saying that it’s not going to be an emotionally challenging career, but at the same time, these are truly incredible and lively children. These videos portray the fun and joy  that is also part of pediatric oncology. These children embrace their passions and make the most of their time in hospitals by playing games, making crafts, and finding reasons to laugh.

That’s why these videos make me smile.

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A Childhood Cancer take on Katy Perry’s Roar

Similar to Seattle Children’s Hospital’s performance of Stronger by pediatric oncology patients and staff, the Children’s Hospital at Dartmouth-Hitchcock did their own rendition of Katy Perry’s song Roar. This powerful video unites pediatric oncology patients, their families, and the healthcare professionals that treat them come together to sing how “you’re going to hear me roar.”

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Sharing the Clinical Relevance of Narrative at the UM Pediatrics Research Symposium

Instead of numerical values and statistics, my poster shared the words and phrases of children with cancer.  Amidst colorful posters with tables and graphs, my poster was adorned with drawings by pediatric oncology patients, such as cancer as a half-angel, half-devil being.

The 24th Annual Pediatric Research Symposium at the University of Michigan struck me as an interesting opportunity to share my narrative research with clinical pediatricians. I just began delving deeper into these narratives through a literary lens, and I enjoyed the challenge of reframing and furthering my analysis of these narratives for a medical audience. What does narrative illuminate about the living experience of childhood cancer? How do children conceptualize cancer and make sense of their illness experiences? And how can these narratives of pediatric oncology patients inform those who care for them?

Writing this abstract required more than inverting the active tense valued by the humanities to the passive tense valued in scientific writing. Designing this poster forced me to distill the numerous conversations and narratives that I have collected into a direct, concise argument. It was an incredibly helpful, albeit challenging, process.

From nearby poster presenters to practicing pediatric oncologists and more, it was interesting to discuss my research with a broad range of people and receive different feedback. One conversation in particular really resonated with me. A neighboring poster presenter asked me about my work, then confessed that she worked with pediatric oncology patients as a social worker for years. She said that it was a difficult and challenging position, one that ultimately surged her into depression because it was too much. To be able to work so intimately with these children, she said, “you need some kind of ‘distance.'”

This “distance” intrigues me. As we discussed this further, she explained that social workers preoccupy themselves primarily with the patients and families facing death, the ones struggling most with the interruptions of cancer. Physicians, on the other hand, have the chance to experience the broad range of paths that patients follow with cancer. The successful treatments, the ineffective drug regimens. This spectrum of outcomes helps give physicians perspective, but social workers by nature are honed in on the more despondent stories.

Is “distance” necessary for the emotional challenges of pediatric oncology? And if it is, what exactly does this imply about the impact of these childhood cancer narratives?  I wonder, how might these narratives complicate and possibly challenge this notion of ‘distance’?

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