Tag Archives: Pediatrics

A noon conference for pediatrics residents with Chronicling Childhood Cancer authors

Perhaps it was the ambience of a brightly lit conference room overlooking downtown Ann Arbor. Maybe it was the audience of pediatrics residents at C.S. Mott Children’s Hospital, doctors devoting their lives to caring for children. Or it may have been this event’s focus on teens sharing their own advice for doctors based on their personal experiences. Whatever it was, something was very different about the Pediatrics Noon Conference that I led about the Chronicling Childhood Cancer book project from last year’s Literati book reading/signing event.

A couple months ago, I learned that residents hardly have an opportunity to interact with pediatric patients and their families outside of clinic visits. I was surprised–while medical school is peppered with patient presentations and opportunities to learn more from patients about their experiences, it seems as though these opportunities drop off in residency since residents have patients of their own.

That was unsettling to me, though. Especially with pediatric patients, I think that giving teens and young adults the chance to share their own experiences and perspectives can be invaluable, both for these youth as well as for people who are devoting their lives to caring for these individuals. It’s also a reminder of what it means to embrace PFCC, or patient- and family-centered care: the recognition that we as clinicians must view our patients as partners in their healthcare, and in doing so, acknowledge how much we can learn from our patients. Events such as these demonstrate that there are an infinite number of ways that we can improve and better care for our patients by hearing what they have to say.

At this event, I gave a brief overview of the research project before turning it over to three of the young authors themselves. Each individual shared some of their personal experiences and advice for doctors about just how much of an impact their interactions can have on patients. While the discussion was centered largely on the teens, their parents also contributed some insight. Overall, this was a change from the typical noon conference lecture, and it sounds like many appreciated what this unique noon conference had to offer.

I was more anxious preparing for this event than I have been in a while, and I think it’s because I’m more aware of how precious time in medical education can be. I know how much people fight over this time to make an impression on doctors in the making. It truly is incredible to me that I have had this opportunity; it’s crazy to think that I have been a part of their education, that I may have been able to influence the kind of physician that some of these residents may be with their patients.

One of the highlights for me was the very end. A number of people had to leave immediately since the event concluded right at 1pm, but I was amazed by how many people still chose to stick around and speak at length with each of these patients and their families. That meant so much to me, and I know that it meant a lot to the young authors. Instead of just getting their books signed and leaving, these residents took the time to connect with the teens and their parents. In the end, I know that this was the point of it all: to give residents a chance to get to know and learn from teens with cancer in a different way, and to make space for teens to share their personal experiences.

Pediatric Noon Conference- Outline

Pediatrics Noon Conference- Slides

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

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

Grace: Tracing Childhood Cancer Through Treatment and Beyond

Melinda Marchiano and I share a number of similarities. We are writers who come to understand the world and our own experiences through language. We are dancers who have unearthed a passion that we will pursue for the rest of our lives. We are aspiring pediatric oncologists, eager and excited to pursue medical careers. But unlike Melinda, I’ve only encountered cancer from “the outside of the needles and sickness” (Greer 52).

graceI met Marchiano by reading her memoir, Grace: A  Child’s Intimate Journey through Cancer and Recovery. Marchiano writes her story in journal entries of sorts with interspersed snapshots of milestone memories and powerful quotes. She reflects deeply on her cancer experiences, sharing her thoughts on the diagnostic label of cancer, the paradoxical effects of chemotherapy, and the tensions of mind and body through illness. Her conversational and confessional writing reveals her sense of humor and personality.

Marchiano’s comprehensive memoir seems to capture the essence and nuances of her experience with childhood cancer. Rather than attempt to summarize these, here are just some of many excerpts that were particularly compelling to me:

“[Chemotherapy’s] a sort of ‘chemical feeling,’ like battery acid that races through your veins. I felt terrible, and as I write this now, recalling how sick I was, nausea and dizziness have returned to me. I only now noticed that, feeling so passionate about my writing, I am virtually reexperiencing it. Chemo may eventually leave your body, but it always stays with you” (50).

“I longed for the feeling of dancing, the feeling of freedom, the feeling of the studio air filling my lungs, and the feeling of my heart beating as one with the music. I decided I would work hard. I would do it…I would dance again. The fear of hard work did not exist within me. Becoming accustomed to pain, I now didn’t care one bit how badly anything hurt” (119).

“I noticed that, hey, maybe I did have a story. But if, indeed, I did, I didn’t really think that anyone would want to hear it” (140).

“When I wrote my speech, I questioned how much I should share. Pondering it for quite some time, I decided to lay it all on the line, to give it to them straight. Cancer does exist. My suffering was real, and I needed to acknowledge that” (224).

“Cancer kids need just as much help after treatment as during. We’re like giant walking wounds, with each touch stinging and painful. Only time can make the wound scab over and begin to heal. But during that vulnerable time, we need a Band-aid” (272).

Marchiano now advocates strongly for childhood cancer research. In sharing her story, she has found that “my cancer had a meaning– a purpose. It was doing what I thought it was not capable of doing — giving” (196).

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