Tag Archives: Mott Children’s Hospital

Kicking Off Childhood Cancer Awareness Month by Answering the Question: Why?

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:

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

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