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.

Where We Stand with Childhood and Young Adult Cancer

Let’s start with some of the basic facts about childhood cancer and young adult cancer, excerpted below.

  • “Cancer is the #1 disease killer of children”
  • “Cancer is the second leading cause of death exceeded only by accidents”
  • “80% of children diagnosed with cancer are in developing countries.”
  • “50 years ago, less than 10% of children survived cancer.” Now, more than 80% do.
  • “The late effects of treatment – which are often life-threatening – mean that ‘childhood cancer is forever.'”

These facts are illustrated by this infographic by The Children’s Hospital of Philadelphia. I think that these five points highlight the key issues surrounding the childhood cancer phenomenon. It remains a serious concern for the lives of children around the world. We’ve come a long way in understanding pediatric cancer, but there remains much for us to learn about causes, treatments, cures, and longterm effects. Childhood Cancer Awareness Month aims to illuminate these insufficiencies so that we can recognize them and do something.

Gold ribbon

Niki K; BY-SA.

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September: Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month.

September is Childhood Cancer Awareness Month. Niki K; BY-SA.

September is Childhood Cancer Awareness Month in America. Last year, President Obama declared this month to honor the cause of childhood cancer. Represented by an elegant gold ribbon, this is the 2nd September to share the stories of children with cancer, to recognize the research we do for these children, and look ahead to what more we must do.

In honor of Childhood Cancer Awareness Month, I dedicate my  posts to this cause. I will reflect on memoirs and other narratives about childhood cancer that I have stumbled upon.

“This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer.  May their courage and commitment continue to move us toward new cures, healthier outcomes, and a brighter future for America’s youth” (Barack Obama, 2012).

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My Other Voice: Giving Voice to Young Adult Cancer

On the brink of graduation and a Broadway career, cancer threatened to take Alex Kip’s voice and his life. Two years later, Kip has held on to both, and he is sharing his story through theatre.

My Other Voice is a play written by Kip about his personal experiences as a young adult with cancer, starring Kip himself. Upon diagnosis, his mind was set on recovering in time for the “silly” senior showcase that doctors didn’t understand. When Dr. Foster asks Kip’s mom to break it to him that he would not be able to participate, this responsibility lingers; when it finally reaches Kip, he becomes distraught and untrusting. Interactions with the medical realm conveyed an arousing critique, calling for greater sensitivity in medicine. For respecting what patients value most in their lives and appreciating these needs whenever possible.

Kip experiences the destruction and recreation of identity as he loses his singing voice and finds a new one. As a patient, he loses independence and his sense of control as he is forbidden to work out. Cancer’s disruptive nature into Kip’s life as well as those around him is brought to life by the realness of each character. Each person responds to Kip’s cancer differently, physically and emotionally. Their actions and coping mechanisms vary, and getting to know these nuanced personalities and witness their transformations was a resounding effect of the play. The personal nature of illness as it permeates into lives is performed.

With the intimacy of the thrust stage, the audience is immersed in the performance. With young adult dialect, iMessages, and popular rap music, we enter into the college life. We even follow Kip and his friends as they get high off magic brownies infused with marijuana. Amidst the devastation of cancer, Kip finds friendship in a fellow cancer patient. Amy redefines what it means to have cancer, explaining that “You’re a survivor the day you start fighting.” While she herself does not survive in the traditional sense, her voice remains influential to Kip. Amy’s death illuminates the emotional depth to cancer, the disease reasserting itself as a threat to vitality.

Following the performance was a talk-back session led by Dr. Ora Pescovitz, the CEO of the U of M Health System. Through an interactive conversation with performers and audience members, some of the ideas introduced by the play were given voice. The discussion revolved around the controversy of medical marijuana, critiques about the medical profession, and value for artistic therapies in patient care.  I asked Kip a question of my own:

How did the experience of retroactively narrating through play differ from writing a Caring Bridge blog throughout treatment?

Kip noted how the therapeutic process of writing began to substitute for his lost voice. He explained that in adapting his story to play form, he referred to his Caring Bridge posts and some of his private journal entries. These helped him to reconsider the disturbing, to remember the forgotten. “When I was sitting in the hospital I realized that I could use my gifts to make a different in the fight against “cancer” (UM Cancer Center interview with Kip).

Kip demonstrates how everyone can play a role in the illnesses experience. The play may conclude with Kip singing alongside his loved ones, but his revitalized voice continues to resound.

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One Week and Five Patients Later

It’s incredible when the long anticipated is greater than ever expected.

That’s how I feel about my thesis research. I’ve said this before, but I still can’t believe that it has come this far.

As an aspiring Pediatric Oncologist, the experience of interacting with the variety of health professionals in this realm is invaluable. But what I treasure most is the time that I have spent with each of my patients: the words exchanged, the deep inhalations, the glances away, the silences. In many ways, what cannot be captured naturally in front of a recorder are the things that I have held on to from these conversations.

The Pediatric Heme/Onc staff at Mott have all been so helpful and enthusiastic, the patients and their families kind and supportive. One of the things about volunteering with these patients for years is that not only do you never forget them, but they never forget you either. I was touched when a mother recognized me from my presence in the playroom over the years.

As I’ve begun to implement the research protocol that I designed, I’ve become grateful for the flexibility engrained in my project. Most children that I have worked with seem to prefer having a verbal conversation about their experiences before constructing their written stories, but that has not always been the case. And the age range for the study, 10-17 year olds, has proven to be more restricting than focusing. I think that to capture the spectrum of cancer diagnoses and effects, I will need to expand this to include children as young as 6 or as old as 21.

After we had completed the activity in its entirety, one patient told me that this was the most that he had ever spoken about cancer. And perhaps that is what I have been reaching for all along. As volunteers, we engage with these patients but never directly confront them about their diagnoses because that is not what is important. This activity allows me to explore  this unknown taboo, to dive in headfirst.

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A Series of Fortunate Events

Today, June 20th, has officially become significant to me. Here’s why:

1. IRB-MED approval

My thesis research, Chronicling Childhood Cancer, has officially received approval from the IRB-MED at the University of Michigan. I filed the application two months ago, and I’ve had my fingers crossed ever since. Now, I can’t wait to get started.

2. WordPress friends

Ever since my spontaneous article about ICU patient diaries was featured by WordPress on Freshly Pressed, I’ve been honored by how many people have visited my blog. And more than that, perused my blog. Engaged in this discourse. I’ve been excited to make a series of what I call “WordPress friends,” and I’ve been touched by how many people have chosen to follow my blog. Today, I have reached 200 followers. And for that, I thank you.

3.  Blog pride

The previous two highlights to my day have served as a catalyst in my decision to include this website in my email signature. Ok, I know that this may not be a big deal, but it means something to me. I’ve been toying over this idea for the past few weeks; I’ve come to realize just how integral this blog is to what I value, and I’m excited to claim it as part of my identity.

This is what I appreciate and celebrate. The big things and the little things.

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Beyond the Face of Illness in Lucy Grealy’s Autobiography of a Face

Although Lucy Grealy’s title Autobiography of a Face suggests an emphasis on her physical transformation in response to cancer, I believe that her novel feels more like an Autobiography of a Soul. As a child, she was diagnosed with Ewing’s sarcoma; for her, cancer of the jaw bone. But rather than focus on merely the corporeality of her cancer, she expresses its indirect, internal invasion of the self through written word.

Grealy seeks refuge in the attention she receives in the medical sphere, a space that imperfectly fills the void created at home. In writing, she travels through her life experiences and allows the reader to explore the inner depths of her mind as she retrospectively relives the past. She discusses her traumatic experiences with cancer:  unforgiving treatments of chemotherapy, radiation, and surgery; the futile persistence of reconstruction.

Although initially unaware of the implications of such an illness, her maturation over the years enables the appearance of psychological scars. Grealy defines her burden of depression, her feeble sense of identity, her struggle to conceptualize and cope with beauty, her hopeless disregard and perpetual desire for love.

Cancer certainly provides a backdrop, or rather a catalyst, for Lucy Grealy’s story, but her story is so much more.  Woven through her work is a thread of tension between her external and internal persona, between her face and her soul. The disjunction between these situates her within struggles larger than the physical disease. 

What struck me is that Grealy makes a point of resisting an illness narrative understanding of her story. Instead, she regards cancer as “not the part of the story I’m interested in” (230). Unlike a majority of patient illness narratives, Grealy is a writer. Her profession has shaped her grasp of language and eloquent creation of memoir (or recreation of memory).

This raises the question: to what extent should a narrative about illness be defined as such, and how does it artistically escape this narrow scope? What I mean is that yes, Grealy discusses how cancer affected her life, but does this focus overshadow the merit behind her novel as a written work? Ann Patchett summarizes this powerfully: “Certainly, Autobiography of a Face can be read as an account of a child’s cancer and disfigurement…but it can also be read as it was written: as a piece of literature” (232).

Grealy demonstrates that although narratives can indeed provide great insight into the experience of illness, this does not qualify a general ignorance of what lies in the periphery. Creators such as Grealy recognize the illness experiences conveyed through narrative and the others that escape narrative; readers must do so as well. Grealy notes the empowerment and limitation of language:

“Language supplies us with ways to express ever subtler ways of meaning, but does that imply language gives meaning, or robs us of it when we are at a loss to name things?”

Illness narratives are about more than illness; only in understanding the more can we arrive at an understanding of the illness.

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Grand Rounds Conference: Introducing Illness Narrative Research to a Care Team

It was exciting to be in a room full of people who care about the same kids that I do. I was sandwiched between a talk about clinical procedures/research protocols and patient care deliberations; I was a bit frazzled at first, but it was an honor to have the opportunity to present my English thesis research project to the Pediatric Oncology Care Team at Mott Children’s Hospital.

I loved looking out into the conference room and recognizing people who I’ve been learning from and working closely with over the past few weeks. Realizing that they were all here and interested in what I had to say.

As always, I felt as though I could have spoken better, but overall my research project presentation was a huge success. Everyone contributed valuable insight about the project, and I’ve captured some of the ideas that arose here:

When is it too early to approach patients after a new diagnosis?

There were mixed ideas about this. Some people thought that immediate diagnosis would leave patients and families more sensitive and vulnerable, so maybe we should wait to reach out to them. Others recognized that this is a valuable time within the illness experience. I’m not sure that we reached a consensus about this, but it will be something to keep in mind through recruitment.

What kind of editing will be done with the child’s narratives?

My goal is to keep these narratives as authentic as possible. I ideally do not want any editing of these narratives to occur prior to publishing; I want these narratives to be published with misspellings and all.

Will you be noting that your perspective as the sole researcher is subjective?

This was an interesting idea that I hadn’t thought about it, but it’s incredibly true. My presence during this narration and my in-person encounter with these children, these authors, will certainly bias my own perspectives and insight into these narratives. This is especially true considering that I am the only researcher who will be working with these children. I need to think about the implications of this idea more, but I’m glad it was brought up.

After the talk and discussion, it was incredible to sense the energy everyone had. The environment was charged with enthusiasm; everyone was impressed with how far this project has come and the potential it holds. I’m so glad that I will be able to work closely with these caring staff, and I hope that this research will transform the experience of these patients.

I was touched that a few people came up to me afterwards to suggest the following:

A book by a Medical Anthropologist about this taboo sphere. I hadn’t heard about it before, and I look forward to reading it!

A compelling video created by a pediatric oncology patient at Mott. Mary has documented her experience with cancer through photography, and she has composed a powerful song to accompany it.

I still have a lot to think about over the next few weeks (while I’m in Kenya!), but I can’t wait for my research to begin.

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Talking the Talk

In preparation for my talk to the Pediatric Oncology care team at Mott (tomorrow!), I’ve been  trying to figure out what it means to actually give a talk. I’ve taught classes, led discussions, and given presentations before, but there’s something different about giving a ‘talk’. And while I gave a mock one a few weeks ago, I wanted to make sure I was entirely up to speed before presenting my English research to a room full of physicians and nurses.

Two resources in particular have been of great help to me, in addition to all the people with the patience to hear me rehearse.

1. How to Give an Academic Talk, v4.0, Paul Edwards

Edwards outlines the good and the bad in the art of academic talk. He considers things to think about in preparation for the before, during, and after.  He contrasts the better and the worse and discusses some of the decisions required in giving a talk. The conversational tone of this guide helps to transform tips into tangible examples.

My favorite thought: plan a final sentence. So, so important to end powerfully and let your words resonate.

2. How to Give a Killer Presentation, Chris Anderson

Anderson from TED proves that everyone has the potential to give a powerful TED talk. He illustrates the story of Richard Terere, a shy boy from Kenya who was able to tell his story smoothly and effectively with training. Anderson draws attention to the importance of simplicity, preparation, presence, tools, and overall cohesion. Interwoven through his guide are TED talks that reinforce his points.

My favorite thought: “A successful talk is a little miracle- people see the world differently afterward” (122)

I hope that my talk will leave Pediatric Oncologist physicians and nurses with an increased awareness of narrative in the medical sphere and an appreciation for what narrative can illuminate.

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Show & Tell: A Presentation and Discussion about My Narrative Research

On June 5th, I’ll be giving a 20 minute presentation about my thesis research project to the entire Pediatric Oncology care team at Mott Children’s Hospital. Physicians (attendings, fellows, residents, medical students), nurses, nurse practitioners: all the individuals involved in the care of these children will be introduced to what my research is all about.

In preparation for this incredible honor, I wanted to participate in the Show & Tell series conducted by the Office of Enabling Technologies office at the Med School. My colleagues at Open.Michigan and  ET are some of the most enthusiastic and supportive individuals I’ve met; I wanted to get their feedback about my presentation and  give them a better sense of what I’m doing outside the office.

Overall, I would say that the presentation went pretty well. There’s still more for me to work on (as always), but it was interesting to find how much my passion for the project helped me organize and convey my thoughts.

Here’s the abstract and slides from the Show & Tell presentation–

Topic: Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Illness narratives, stories about the experience of being ill, are becoming increasingly appreciated by health professionals and by patients. I’ll be presenting about my own research in this realm at Mott, exploring how children with cancer express their illness experience through narrative. I’d like to have a discussion about what can be done with these narratives (publishing a book, etc.) and how technology can be involved in extending research that is centered on the patient experience. I’ll be giving a similar presentation about my research project to the Pediatric Hematology/Oncology department in June, so I’d appreciate any feedback about the presentation and the future of this project.

Chronicling Childhood Cancer- Show & Tell Presentation

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In Honor of Zach Sobiech

An incredible kid with an inspirational story about living life in the face of death:

For Zach, “life is really just beautiful moments, one right after the other.”

Faced with the terminal diagnosis of osteosarcoma, he realized that “my closure is being able to get my feelings into these songs.” Zach’s own illness narratives took the form of music.

Zach died this past Monday, “fly[ing] up a little higher.”

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