Category Archives: Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

These blog posts will chronicle the process of my illness narrative research. My research project, Chronicling Childhood Cancer, will explore how pediatric oncology patients express their illness through writing, speaking, or drawing.

[Cancer Knowledge Network] World Cancer Day 2017

This article is also available at the Cancer Knowledge Network. Republished in honor of Childhood Cancer Awareness Month this September.

I could never have anticipated how much the field of oncology would excite me. As a teenager, I chose to volunteer with pediatric oncology patients on a whim. I found myself fascinated, and deeply humbled by the psycho-social challenges that these young patients and their families face. I found my way to medicine, and I wondered whether the medical field of oncology would be similarly intriguing to me.

It was. It was exciting for me to understand the patient population I cared so deeply about on an even more intimate level, as I began to make sense of the medical language and decision-making that so impacts these lives. As a medical student, I have had the privilege of caring for patients with a variety of cancers. I have helped care for patients with gynecologic cancers such as ovarian cancer, medically manage adult and pediatric cancers like leukemias and lymphomas, as well as surgically remove cancers like breast cancer and metastasized melanoma.

As I reflect on all my patients over this past year, my fondest memories come from caring for oncology patients. In the face of such a serious and devastating disease like cancer, I feel as though my relationships with patients were even more meaningful. I am grateful to have found a field that not only allows but encourages me to develop such intimate relationships while I care for people.

World Cancer Day is yet another opportunity for us to remember that cancer, like the human race, is inherently diverse. While we strive to find “the cure for cancer,” we must all remember how different each type of cancer is, as well as the great variety in how these cancers inhabit different bodies. Perhaps most importantly, cancer also affects each individual in a unique and unpredictable way. This month is a chance to appreciate the breadth and depth of all that people go through with cancer.

To me, World Cancer Day is a reminder that while we’ve made incredible progress over the years, we have so far to go. I am excited by the HPV vaccine, and the opportunities that we have for early cancer screening. I am encouraged by the Cancer Moonshot initiative and other efforts to fund further research. I look forward to increased awareness, as more people understand the harms of smoking and take steps toward cessation.

With this new year, I am realizing just how much I have learned about the biological disease of cancer, the clinical management and, most important to me, the challenges that people with cancer can face throughout and because of their treatments. With each new year, more people are diagnosed with cancer, but more people are also dedicating themselves to the cause of cancer. I look forward to seeing what this new year will hold.

 

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[Cancer Knowledge Network] What September Means to Me

This article is also available at the Cancer Knowledge Network.

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Painting wooden figures is an all-time favorite craft for kids at C.S. Mott Children’s Hospital. Five years ago, a little boy with no hair sat beside me, splotching gobs of glittery paint atop a dragon made of wood. I don’t remember the boy’s name, but I remember his face, his kind eyes. When his mom came to get him from the playroom after he had been discharged, he turned to me. “This is for you,” he said. And before I could respond, he had bolted out of the playroom and was halfway down the hall, his left arm reaching up with little fingers curled tight around his mother’s hand.

I will never forget how moving it was for me, how touched I was by his altruism. This little boy, genuinely selfless, didn’t think twice about giving me his carefully crafted creation. He wanted a complete stranger to have it. Children like him inspire me.

September may be half over, but not a day has gone by that I haven’t thought about Childhood Cancer Awareness Month. Throughout my journey in medicine, although childhood cancer has been a cause that I’ve been passionate about for many years now, I have tried to keep an open mind about my career selection. But I’m the kind of person who has always known what I’ve wanted. This is who I am, and this is what I am about. I am determined, now more than ever before, to pursue a career in pediatric oncology and palliative care. I want nothing more than to dedicate myself to improving the lives of these children and their families in any way that I can.

But September is not about me. September is about all the children around the world diagnosed with cancer. All the loving parents devastated by the news. The siblings struggling to understand. The families that suffer so deeply. September is just one month, and 30 days is not nearly enough.

Let’s face it. It’s not ok. It’s not ok that so many children, instead of starting school this September, are being diagnosed with cancer. So many children are spending their days in and out of hospitals instead of in classrooms and outside playing tag at recess.

September reminds me just how important the cause of childhood cancer is to me, and how important it should be to all of us. Childhood Cancer Awareness Month celebrates the great strides that we have made in caring for children with cancer, and at the same time looks ahead at the great challenges that remain. This month calls for reflection, about how the landscapes of awareness, research, policy, and clinical care have all evolved with time. And, how much farther we still have to go.

The dragon sits atop my bookshelf. It reminds me every day of the little boy who taught me how to be selfless, who showed me the meaning of altruism even if he didn’t know what the word means.

So many of these young patients and their families have touched me over the years. I hope that I can someday return the favor, that I can touch the lives of those affected by childhood cancer with my own version of “glittery dragons.”

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[Cancer Knowledge Network] Talking to your Child about Death and More

This article is also available at the Cancer Knowledge Network.

“What is cancer?”

“Something you can die from,” an adolescent in remission once told me.

He later described his treatment to me, saying, “if it weren’t for the treatment, I would’ve been….” His voice trailed off as he swiped a finger across his neck and made a krrr sound. “It’s true,” he concluded, nodding.

This teen, in this moment, chose to express himself outside of words. He had been comfortable defining cancer explicitly in relation to “death” before, so why did his words falter now? I remember being taken aback by this symbolic beheading, an action fraught with connotations of cancer as both violent but also punitive. I wondered how many other children associated cancer with death, how many felt as though they were receiving a death sentence when diagnosed.

In a world where cancer is one of the leading causes of death for adults, it’s no wonder why many people instinctively associate cancer with dying. With cancer as a disease commonly in the spotlight in society—with Cancer Moonshot and other awareness efforts towards prevention, treatment, and cure ever-present in the media—I worry that many kids have fears of death earlier on that often go unaddressed. A fear of death can be held by any young person with cancer, even those with highly treatable forms.

With these high cure rates for some childhood cancers, I can understand why discussions about dying may not immediately enter into the picture. I feel like conversations about death and dying often happen late in the course of treatment, sometimes as they should. That being said, I think it’s important for children to feel comfortable voicing any concerns that they may have about what it means to have cancer as a young person.

This conversation illustrated to me the importance of understanding a child’s fears upon diagnosis and throughout the course of treatment. Another teen I spoke with defined cancer as “[s]omething… that… makes you special…” I asked her how, and she proceeded to explain “cause…I don’t know. Cause, you get to meet a lot of people with that and not a lot of people are able to do that.” To her, cancer was something that she valued. She appreciated the people that she was able to meet because of her cancer. Her perspective on cancer was less antagonistic and more thankful for the good that had come out of her diagnosis.

This, to me, is one of the reasons that palliative care and child life support early in a child’s cancer diagnosis can be especially instrumental. These specialists devote a great deal of attention to a patient’s understanding and ability to cope with a cancer diagnosis. Since cancer can mean something entirely different to each and every individual, taking the time to focus on a patient’s perspective on cancer can improve a young person’s quality of life and enhance healing.

Simply asking can make all the difference: What does having cancer mean to you? How do you feel about your cancer treatments? What worries you about the future? From open-ended discussions to coping activities, palliative care and child life specialists are equipped with tools to delve into the psychosocial complexities of a cancer diagnosis, be it a fear of death or a new perspective on life. But these are questions any provider can ask; anyone can express an interest in the many ways cancer permeates into one’s life. By asking, we can show youth that we care.

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[Cancer Knowledge Network] Pediatric Palliative Care: A Multidisciplinary Approach

This article is also available at the Cancer Knowledge Network.

I have to admit—one of the first reasons that palliative care first piqued my interest was because I wanted to learn more about death. But as I’ve delved deeper into palliative care, I’ve come to realize just how much more comprehensive it is. While increasing access to hospice care is a component of what palliative care provides, palliative care does so much more for patients and families.

When I first started volunteering with patients at C.S. Mott Children’s Hospital, pediatric oncology jolted me to see how cancer can affect all humans, even kids. But the realization that terminally ill children face the unknown prospect of death every day was most jarring to me. Death was no longer an abstract fate for the elderly but rather a real concern for the babies I held, the kids I spent time with on Friday evenings.

As a teenager myself, it was especially hard to see other teens having to go through the experiences of being diagnosed and treated for a life-threatening disease like cancer. I became interested in how people of all ages, and especially children, understand and cope with death. I found that palliative care does not shy away from these end-of-life topics but rather starts many of these difficult conversations. Similarly, palliative care provides additional support by devoting attention to the pain that patients may be experiencing as well as the discomfort from symptoms and side effects.

The American Academy of Pediatrics (AAP) recommends that ideally, palliative care should begin (or at least be offered) when a child is first diagnosed with a life-threatening disease[1]. Pediatric palliative care aims to support young patients and their families throughout the entire experience of illness, from diagnosis to treatment, remission to relapse, and even end-of-life when applicable.

For kids undergoing treatment for cancer, imprisonment by IV pole and pain by poke may be what they know. Many have no choice but to curl into the humbling fetal position for spinal taps. These children hold on to the simple pleasures in their lives by putting a port on a teddy bear or playing with a Barbie doll that has no hair. Each child finds a different way to cope, and I have grown to admire these children. Pediatric Palliative Care, along with other health disciplines such as Child Life, provide additional support to help children cope with a cancer diagnosis and the difficult treatments that it entails.

We’ve come a long way in treating pediatric cancer over the past several decades, but it’s not enough to stop the uncontrollable growth of cancer cells without recognizing the psychological scars left behind by its presence. Cancer treatments can have life-long health consequences, and the support of pediatric palliative care involvement throughout the course of treatment has the potential to have a lasting impact on patients.

This, to me, is what pediatric palliative care is about. Pediatric palliative care is about ensuring that young patients have the best of quality of life that they can while experiencing life-threatening illness and its corresponding medical interventions. It is about devoting special attention to more than a child’s physical health but also their mental, emotional, and spiritual wellbeing. As a multidisciplinary team generally composed of physicians, nurses, social workers, psychologists, and chaplains, pediatric palliative care is able to support children as well as their siblings and parents more holistically.

Palliative care, especially in the pediatric world, encompasses end-of-life and much more. As the AAP states, “Reserving palliative care for children who have exhausted every curative treatment and are dying would mean that many other children would miss out on the benefits that palliative care can offer.” It has been encouraging to see how much pediatric palliative care has become established and valued over the past several years, and I look forward to getting involved in the field in the future.

 

[1] http://www2.aap.org/sections/palliative/whatispalliativecare.html

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[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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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.

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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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