Tag Archives: C.S. Mott Children’s Hospital

[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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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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Helping: A podcast interview

About a year ago, I had the opportunity to share my journey into medicine through Inside Stories. Now, after finishing my first year of medical school, it was a pleasure to chat with  J.J. Bouchard, a Certified Child Life Specialist and Certified Therapeutic Recreation Specialist at C.S. Mott Children’s Hospital, about my experiences helping others.

Helping: Conversations with Child Life Specialists and Other Helper Professionals is a podcast that features people who have dedicated their lives to helping others. I was truly honored to participate in this podcast project and to have a chance to reflect on my experiences as a helper and what being a helper means to me. In this podcast, I shared some of my experiences with the Chronicling Childhood Cancer narrative project and the book, as well as the current volunteer work that I’ve become involved in as a medical student.

J.J. was instrumental in helping me with my research project (as you’ll hear about if you listen to the podcast!), and his podcasts provide great insight into the stories of people who devote themselves to helping others. It is incredible to me the variety of ways that people choose to make a difference in the lives of others, and listening to these podcasts has reminded me that there is so much that we can learn from each other.

Check out the podcast here, and subscribe to hear more from other helper professionals!

http://www.helpingpodcast.com/?page_id=10

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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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Chronicling Childhood Cancer: Ethical Considerations in Self-publishing the Work of Others

To publish a book: a dream held by many, achieved by few.

Until now. Self-publishing has revolutionized the world of books, forever altering what it means to be a published author. But what happens when an author is actually an editor responsible for a collection of works, none of which are her own?

This September, Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer was published. Edited by me, Trisha Paul, this collection of works consists of narratives collected from my research with pediatric oncology patients at C.S. Mott Children’s Hospital.

There are a lot of questions that I grappled with throughout the publication process, and they left me filled with both excitement and anxiety. What does it mean to self-publish a book that is entirely based on the contributions of others? Perhaps nothing, perhaps something. For me, it was important from the start that the focus remain on the children and teens with cancer.

Yet as the editor of this collection and the collector of these stories, I inevitably had the responsibility of making decisions regarding this publication. How much did I want to disclose about myself as the editor? If I was not including any images of the child and teen authors, was I comfortable including my own picture? How could I adequately summarize where this idea came from in the Preface without dwelling too much on my personal story?

Throughout the process, I kept wondering whether I was overthinking these seemingly minor details, but I always found myself agreeing with my initial concerns. These questions may seem superfluous or irrelevant, but they are the kind of concerns that I have contemplated from the start. Although the book may be attributed to me as the editor, I believe that it is not I who is being published but rather each of these contributing children. By making these important ethical considerations, I was able to achieve my ultimate goal: to maintain the focus on these young child and teen authors.

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Chronicling Childhood Cancer: About the Charities

All proceeds from the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer will support the following programs at C.S. Mott Children’s Hospital. These programs are near and dear to me, and I believe that they represent the multiple dimensions that we must address within the cause of childhood cancer:

Fifty percent benefitting the Block Out Cancer campaign for pediatric cancer research at the University of Michigan.

“C.S. Mott Children’s Hospital is home to the largest cutting-edge pediatric research effort in the state of Michigan. We believe every child deserves a cure, and we have established the Center for Childhood Cancer to help us find different, better ways to cure childhood cancers.”

“Our teams are conducting basic science, translational research and clinical research with a goal of finding new cures and better ways to deliver current treatments. Our research focus spans from early diagnosis and cancer prevention to developing less toxic treatments and exploring expanding horizons in life-long cancer survivorship so we can understand and improve the long-term effects of cancer therapies.”

Fifty percent benefitting the Child and Family Life Program at C.S. Mott Children’s Hospital.

“The Child and Family Life team at C.S. Mott Children’s Hospital is made up of trained professionals with expertise in helping reduce the stress and anxiety associated with hospitalization and illness.”

“Our Child and Family Life team members work together with doctors, nurses, social workers and others throughout the hospital to meet the emotional, developmental, and cultural needs of children and their families. Some of the special services we offer for patients and families include:

  • Procedure preparation medical play and support
  • Activity centers
  • Hospital school program
  • Art therapy
  • Music therapy”

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