Tag Archives: pediatric oncology

‘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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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Dance, Film, Theatre

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

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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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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