Tag Archives: Childhood Cancer Awareness Month

Bowties, Butterflies, and Band-Aids: a journey through childhood cancers and back to life

Bowties, Butterflies, and Band-Aids. That’s what childhood cancer looks like, according to Lyndsey VanDyke.

bow-ties-butterflies-band-aids-journey-through-childhood-paperback-cover-artThis memoir shares VanDyke’s “journey through childhood cancers and back to life.” From her first diagnosis with Wilm’s tumor at 11 to her relapse at 13 to her secondary thyroid cancer at 21, VanDyke’s coming-of-age has been especially scarred by cancer. With the voices of her family, friends, and care team alongside her own, VanDyke contextualizes her experiences within the views of others. She provides a more holistic perspective through this multiple lenses.

She organizes her reflections as The Cancer, Aftermath, and Reconstruction. In doing so, she illuminates her post-cancer experience, such as the paranoia from her numerous encounters, her experiences living in  fear. Even after pursuing a career in journalism, VanDyke realizes that her heart lies in medicine. She sets out on the path to medical school, eventually finding her place in Osteopathic Medicine.

“It occurred to me that medical school really wasn’t all that different from a cancer experience. It would be exhausting. It would strain my relationships. It would be insanely expensive” (307). And now, she’s Dr. VanDyke.

1 Comment

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

‘Wavin’ Flag’ at UNC Children’s Hospital

“When I get older, I will be stronger…”

Here’s another great video created by the Department of Pediatrics Hematology/Oncology at the University of North Carolina Children’s Hospital. This video doesn’t seem to be soliciting donations for research or marketing its programs; instead, it is merely “honoring and celebrating” these children and families affected by childhood cancer.

What I love about this video is its informality. While parts of it seem skillfully designed and planned, other moments are simple scenes from that the family retreat, which acknowledges that childhood cancer is an experience that permeates into the lives of loved ones as well. 

http://www.youtube.com/watch?v=DOd-6d4hvM8

Leave a comment

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

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

Leave a comment

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

Childhood Cancer Awareness: September is just the beginning

Every year, I am energized by the month of September. There’s something about Childhood Cancer Awareness Month that brings me back to the Friday evenings that I’ve spent with pediatric oncology patients and their families over the years. I am reminded of the time I devoted to getting to know these children and teens through my research; I have been so moved by these children, teens, and families. This month reawakens in me my desire to raise awareness of childhood cancer, namely by helping to spread the word about the Chronicling Childhood Cancer book.

It takes an incredible amount of courage and strength to do what these young authors, these children and teens, have done– to share their personal experiences with cancer. That’s why I want these stories to be heard by as many people as will listen. I believe that the Chronicling Childhood Cancer book really is unique and compelling, that anyone and everyone can learn something from it. I guess that’s why I’m so motivated to share these stories and shamelessly promote the book.

I’ve blogged extensively (and perhaps annoyingly) about the book, but here’s the rundown:

UnknownChronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is a book that was created from a project that I started with C.S. Mott Children’s Hospital patients for my Honors thesis in English. All of the proceeds of this book are donated to Mott: 50% 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 Mott.

This month, I’ll be sharing daily excerpts from the book via Twitter to raise awareness about childhood cancer. It feels strange to be taking these quotes out of context and into the 135-character tweets, but my hope is that this is a way for me to make them more accessible to a larger audience. To offer a sneak preview of sorts, into the Chronicling Childhood Cancer book as well as into the personal lives of these young children and teens with cancer.

While September gives me momentum, I know that this one month is not enough for this important cause. So much has to happen, and to pretend as though one month were enough time to raise ‘enough’ awareness (if there even were such a thing) is absurd. So stay tuned for more about what I have planned for this year!

Leave a comment

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

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

3 Comments

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

1 Comment

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

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:

boc web page banner image

Leave a comment

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

“Through the Fire”: Melinda Marchiano’s Childhood Cancer Dance

In addition to sharing her story through the book Grace, Melinda Marchiano gave voice to her experiences through a language of her own: dance. Through the Fire embodies her illness experience with childhood cancer.

A beautiful, moving performance.

Leave a comment

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

Block Out Cancer: Helping Children Tell Their Stories

C.S. Mott Children’s Hospital has a campaign for childhood cancer awareness month: Block Out Cancer. Block Out Cancer is “a rallying cry for people from all walks of life to come together to support the fight against children’s cancers.”

I’m honored that Mott has featured this blog post I wrote about my project:

My name is Trisha, and I help children tell their stories to Block Out Cancer.

mott-blog-BOC-thumb

 

Leave a comment

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

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).

2 Comments

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