Tag Archives: pediatric oncology

[Cancer Knowledge Network] Discovering a Passion for Pediatric Palliative Care

This article is also available at the Cancer Knowledge Network.

As someone who loves spending time with kids, I was thrilled when I was placed to volunteer on the 7th floor pediatric oncology inpatient playroom at C.S. Mott Children’s Hospital. Although I was just in high school, I had an early interest in becoming a pediatrician, and Mott seemed like the perfect place for me to learn more.

From talking to teens at their bedside to playing video games or doing arts and crafts with kids, I enjoyed every minute I spent with patients and their families. These activities meant so much more to me as I began to see how integral they were to sustaining children through cancer. These children endure levels of pain that seem unthinkable at such a young age, and I helped them find distractions in board games and plastic food.

With the backdrop of illness, these normal activities were never quite the same. One minute, I was racing trains with a 2 year old. The next, I was gripping his tiny arms and legs to help his nurse draw blood. He put his entire body into his scream, thrashing wildly. But as I held him afterwards, his peaceful demeanor made me realize that I made a difference.

As I spent time with siblings and parents, I witnessed the many ways that cancer permeates the lives of loved ones. As a volunteer, I supported them in any way that I could. I came to believe that talking with kids and families, letting them engage in conversation, to get their mind off things if they so choose or voice their concerns, unleashes the therapeutic nature of the spoken word. From the weather to a child’s prognosis, these conversations illuminated different perspectives of how cancer affects lives. My experiences with these young patients and their families largely contributed to my own desires to devote myself to medicine.

When I started medical school a little over a year ago, I would tell people that I was interested in becoming a pediatric oncologist. Even then, I knew that my interests may change throughout the course of my medical training, but I also knew that this is where my heart was and where it still is, at least for now. Within just a few months, I found myself slowly gravitating towards another discipline that also works closely with children with cancer: the field of palliative care.

Palliative Care aims to improve the quality of life for patients and families, often by alleviating symptom burden, providing pain management, helping with decision-making, and furthering communication about goals of care.[1] Palliative care aligns with many of the aspects of volunteering that were most rewarding for me, as well as my own philosophies about how I hope to practice medicine. From striving to alleviate pain and relieve the suffering that patients experience throughout the course of treatment to engaging in important and intimate conversations with patients and family members about experiences with illness, palliative care prioritizes aspects of medicine that most move me.

Often, these quality of life measures are goals of medicine in general, but to have an entire medical specialty devoted to these important issues has the potential to greatly impact patients, especially those in need. The baby who won’t stop crying from the pain, the teenager who may have wishes that deviate from those of caregivers, the parents who are deciding whether a clinical trial is right for their child—there is no question that cancer diagnosis, treatment, and recovery can present a series of uncertainties, challenging decisions, unimaginable pain, and life-long symptoms and side effects.

I hope that palliative care training will help me to develop my skills and make a difference in the quality of life experienced by children with cancer. By specializing in both pediatric hematology/oncology as well as in pediatric palliative care, I believe that I will be able to develop a more comprehensive knowledge base and gain experiences to ensure that both perspectives will always inform my care. Palliative care embodies the kind of care that I hope to be able to provide for my own patients and their families some day.

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‘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

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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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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!

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An iBook! Chronicling Childhood Cancer now available for download

If you walk through the infusion clinic at Mott Children’s Hospital, you’ll notice a lot of patients have one thing in their hands: iPads! That’s why I’m excited to announce that Chronicling Childhood Cancer has now been released as an iBook, available for download on any iPad or Mac laptop.

With how widespread iPads are becoming for patients these days, I hope that these new version of the book will be more accessible and able to reach a broader audience. At the very least, I want this book to be available to patients and their families waiting in hospitals who may be interested in perusing it. And as always, all proceeds are donated: 50% benefitting the Block Out Cancer campaign for pediatric cancer research at the University of Michigan, and 50% benefitting the Child and Family Life Program at C.S. Mott Children’s Hospital.

It continues to amaze me how much this project just keeps on growing. A special thanks to Learning Design and Publishing at the University of Michigan Medical School for making this all happen, from the hard copy to the electronic version. I can’t wait to see what’s next!

 

Chronicling Childhood Cancer on iTunes

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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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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

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