Just A Kid: Discussing Stories of Those With Pediatric and Adolescent Cancer

Introduction

Go Gold for What?

I have considered becoming a pediatric oncologist since I was in middle school. I even completed a research study in middle school and wrote a ten page paper about why alternative therapies such as animal therapy are helpful for pediatric cancer patients. Complete with a brightly colored cardboard poster, I was ecstatic to teach my classmates and teachers about ways we can help pediatric cancer patients. As excited as I was to share why animals are great mood boosters for cancer patients, I heard others commenting about my poster: The poster looks really unprofessional, and the topic seems so random…I’m definitely not choosing this one for best poster! My little middle school ego was crushed. Although the poster ended up in my garage as trash, I still held onto my interest in pediatric cancer. It’s been more than ten years since my poster presentation, and there is still so much to advocate for and share in the pediatric cancer space.

The sobering reality is that pediatric cancer patients deserve much more attention than my informational cardboard poster. Almost ten years later and now as a college graduate, the striking reality is that pediatric cancer rates are increasing every decade despite more advanced medical technologies. Although the five year survival rate of pediatric cancer increased from 58 percent in the mid-1970s to 84 percent in the most recent decade, an estimated two thousand children and adolescents would pass away from cancer in 2020 (American Cancer Society, 2022).

The glaring call to action is that we need to increase awareness about pediatric cancer, read the stories of those who went through cancer treatment, and ensure enough resources and literature are available to support patients and their caretakers. Besides my middle school research project, I also saw frequent social media posts about pediatric cancer awareness around my birthday in September. Some days I would have a heavy feeling seeing a raise awareness, post while other days I would simply scroll past it. The point is, whether I cared, the rate of pediatric cancer will still increase. Every September, I will still be reminded of those my age who have or had cancer. However, I do not think change has to be transformative or eye opening. If readers of this book can learn one lesson about the complicated nature of childhood cancer, I’m glad this book could help.

Current State of Pediatric Cancer

First, what is pediatric cancer and why should we care about it? Pediatric cancer includes children from age zero to nineteen with the most common cancers being leukemia, brain, central nervous system tumors, and lymphomas. By 2022, 11,050 children under the age of fifteen will be diagnosed with cancer in America. Pediatric cancer is also the second leading cause of death in children after accidents with 1,190 children with cancer expected to die in 2022 (American Cancer Society, 2022). Death is still a difficult topic to talk about no matter the age. Ironically, one of my largest fears is death. I want to at least have a successful career, jet around the world, and open a small cafe filled with the aroma of coffee before I consider death. But you may have heard that death does not wait for anyone. That is why I think discussing death and grief is important, especially as a child matures and forms their own thoughts and opinions.

As discussed in a later chapter, different forms of grief can manifest. For example, anticipatory grief is feeling grief even if someone is still alive. I felt anticipatory grief after a friend decided to cut off our friendship years ago; even though my friend was only twenty to thirty minutes away from me, I still grieved the fact that I was not a part of their life anymore. In my world, they became a distant memory and someone I couldn’t randomly text anymore. Additionally, a child’s perception of grief and death can be much different from that of an adult. One could also have positive views about death. An interviewee in this book, Lea Guccione, did not fear death because she already had vibrant life experiences like traveling all over the world and spending time with her family. Dr. Loeb, a pediatric oncologist, discusses the different ways of viewing death as well. While some families and cultures choose to celebrate one’s life, other cultures may prefer mourning instead. These experiences about death and grief widely vary because of an individual’s life, culture, and society, and they should be discussed with patients and their families.

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Having cancer is not only a physical experience full of changes but also an experience that impacts the mental spirit as well. Along with physical pain from chemotherapy, radiation, pokes from needles, blood work, and surgical procedures, a child’s spirit is deeply affected not only during treatment but also throughout the rest of their life. One thing I learned while conducting personal interviews is that many patients still experience long-term physical side effects after remission with the chances of having late effects increasing over time. Some of these late effects include developmental delays, heart problems, risk of second cancers, and psychological affects like post-traumatic stress disorder and anxiety. Dr. Loeb also explains that certain chemotherapy treatments can cause deafness in patients.

I thought that once someone finished cancer treatment, their body returns back to normal and they resume their pre-treatment lives. However, this is false and shows why education about late effects and the physical and mental impacts of a cancer diagnosis are important. Many students in remission have missed the chance to go to school regularly, which can make it difficult to go back into a classroom. Seventy-five percent of children who went through harsh treatment also have cognitive impacts. Because of this, it can be difficult for schools and teachers to provide a suitable classroom plan along with resources for student success. Furthermore, the response of other classmates and even teachers can cause the patient/student to feel alienated, which highlights the importance of making sure pediatric cancer survivors can have a sense of normalcy as they go through childhood and later adolescence.

Childhood cancer survivors can also face a decrease in lifespan of four to seventeen years due to the risk of late effects as well as damage from cancer treatment. This is disheartening to know, but it is important to recognize and realize that more support can be provided to childhood cancer survivors. We need to care for the physical and mental needs of childhood cancer patients before and after treatment.

The world of health care is also extremely dense. Not only does it involve patients and professionals, but there are also other realms of health care such as policy and advocacy and nonprofits. Specifically, I talked to Torrie Fields, a policy and advocacy expert in palliative care. I was confused about the difference between palliative care and hospice care, but palliative care is not for terminally ill patients. It is for patients who have life threatening illnesses; this does not mean they are dying. This is also specifically for improving quality of life of the patient, not necessarily increasing life span. Furthermore, although many palliative care services exist in the United States, some patients are not aware of their benefits. I asked Torrie, Can’t doctors just give out pamphlets with information on palliative care? Although my proposal was plausible, it is hard to properly relay this to thousands of patients. I blame this on a lack of solid communication and a general confusion with insurance; different insurances may or may not cover palliative care benefits, which can further confuse patients.

There is also debate about the terms cancer survivor and hero. Some of the interviews I conducted revealed that being called a hero or survivor was more uncomfortable than encouraging. These terms seem one dimensional because they do not highlight the different experiences everyone has with cancer. A study in the Journal of Psychosocial Oncology found that using the term survivor is problematic and can be offensive to patients. If the narrative of survivor and hero causes discomfort, these terms should be changed. More importantly, these terms put all patients into just two categories when in fact each journey is individualistic. A common thought I heard from interviews is that cancer is not something that one chooses to go through. Although it is an uncontrollable biological process that requires advanced medical care, the patient is ultimately another human going through life. Rather than extreme praise, simply recognizing that the patient is more than their illness is key. They should not be defined by cancer.

I am writing this book for pediatric cancer patients, their families, and those involved in pediatric cancer (health care professionals, counselors, health care policy workers). My aim has changed from filling up this book with information to sharing stories that readers can absorb and learn from. My hope is that each reader can comb through these stories and learn about how a medical diagnosis can change your mindset and life—not only for the patient, but for their family and friends as well. Although I am a pre-health student with experience in health care, I still learned something new from each person I interviewed and the texts I read. For those who have experienced pediatric cancer or know someone with cancer, I also hope you can spread the word as well and share this book with them. Although I tried to provide unique and useful information, there are still many things to learn from a variety of resources. I hope the reader can continue learning beyond this book and be inspired to positively impact others.

Lastly, I hope this book will be helpful not only to pediatric cancer patients but also to caretakers, medical professionals, and those experiencing other medical conditions as well. One of the biggest lessons I learned was no cancer story is truly the same. My perceptions of cancer were skewed by the narrative that pediatric cancer patients are bald and frail with