Tag Archives: chronicling childhood cancer

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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Thinking about the Chronicling Childhood Cancer book reading/signing event… Still

I have to apologize for the blog silence. Sometimes life gets in the way of things, no matter how important they may be to me.

Three weeks ago, it was my pleasure to hold a book reading/signing event for the recently published book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer. I had approached Literati Bookstore in downtown Ann Arbor on a whim, thinking that if there was any bookstore who may support this local book publication of stories by youth with childhood cancer, it was them.

Before I had even finished telling them the whole story, they had said “of course.” They kindly invited me to host an event to launch the book, to get the word out about it and raise more awareness about the cause of childhood cancer. They were so supportive about this project that they even wanted to donate 100% of the book sales from the event: as with the book, 50% of the donations would go to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at the University of Michigan C.S. Mott Children’s Hospital.

I tossed around a number of ideas about what to do for the event, ultimately deciding that it would be best to let the children share their stories themselves. After I contacted all the young authors, we were fortunate enough to have three join us at the event (one other author realized that he had too much math homework that day, but I reassured him that was entirely valid and it made me smile to hear that school was his excuse).

It’s hard for me to summarize what happened that night. So hard that it’s taken me weeks to find the words to write about it (somewhat) coherently. The event as a whole moved me more than I had ever anticipated.

I had certainly been nervous about the event because of how sensitive this topic of childhood cancer is. I think that in the back of my mind I feared what could happen all along and how emotional the experience of sharing their stories could be for the authors of this collection. But in reality, I hadn’t mentally prepared for it.

By its very nature, the book reading was an emotional experience for the young authors as well as the audience. It was not easy for me to watch as these teens stood under bright lights in front of a room full of people, overcome by emotion as they shared their personal and very intimate experiences with cancer. I was struck by their determination and persistence to tell their tales- it was just one example of what courage in the face of cancer looks like.

After the event, each of the authors thoroughly enjoyed signing copies of the book. Even though the event had clearly not been easy for anyone, they were all eager and excited about the prospects of doing another book reading/singing event and maybe even meeting some of the other authors.

As far as this project has come, I’ve realized that I’m not done with it now, and I probably won’t ever be. There’s just so much more that I want to do to share what these children and teens have shared with me, and I’m as determined as ever to make the most of all that this project has taught me. But I also know that I need time, and that’s ok.

To this day, I am struck by just how much this event moved me. The standing-room-only audience of friends and family, health practitioners and local strangers. The kind words of appreciation expressed by these young authors and their parents. The knowledge that all that I have put in to this research, this book, and this event has touched these teens more than I had ever realized. It was overwhelming, in the best way possible.

Literati book reading signing event- Event Plan

Literati book reading signing event- Research Overview

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

[From Mott Children’s Hospital blog] Sharing the voices of children with cancer

With excerpts from the Chronicling Childhood Cancer book, this blog post was included in the C.S. Mott Children’s Hospital Hail to the Little Victors blog. I’m honored to be a part of such an important initiative; I truly believe that “everyone has a role to play to block out cancer.”

Sharing the voices of children with cancer

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