The first time I ever saw a fictional character with cancer, they looked just like me.
I was five years old and recently diagnosed with acute lymphoblastic leukemia.
I ended up missing over 100 days of kindergarten that year. Early in September, child life specialists from my cancer center came to give a presentation to my class, complete with a puppet show and a reading of Why, Charlie Brown, Why. They wanted to give context to the fellow 5 year olds who were confused why I always wore a hat in class and often had to sit out of recess.
"Why, Charlie Brown, Why" was my first experience with pediatric cancer in the cultural media.
Developed with the help of the American Cancer Society in 1990, this picture book tells the story of Janet, a new friend of Charlie Brown who learns she has cancer after experiencing flu-like symptoms and constant bruising at school. Charlie Brown and his classmates learn about Janet’s illness and deal with her subsequent re-entry into school following remission. My experience resembled Janet's in the story - bumping my legs on the school bus and bursting into bruises, having my kindergarten peers come visit me in the hospital. Janet describes the emotional pain associated with losing her hair, and her negative experiences once back in class. This book gave a mechanism through which my friends could understand what was happening to me. It even helped me understand what was happening to me.
I finished treatment in the second grade, but I kept gravitating to the same genre for the remainder of elementary and middle school. I didn’t know any other pediatric cancer survivors, and I yearned to find something that resembled my experience like the Charlie Brown book did. The more novels I read, the more I struggled to find anything accurately resembling me. No one mentioned accurately the issues involved in my illness, much less my remission. As I aged and started sharing my experience with more pre-teen peers, they didn’t have enough knowledge to understand or properly empathize.
I would tell my friends about my trip to Disney World through the Make A Wish foundation, and they usually referenced a joke in The Fault in Our Stars, where a main character Augustus makes fun of fellow cancer patient Hazel Grace since going to Disney World is the most cliché wish possible. It quickly became clear to me how much of their little knowledge was found in books. They were unable to grasp the impact of my thousands of chemotherapy doses but understood a joke made in a romance novel. As I grew up, I became more interested in the medical profession. I shadowed my own pediatric oncologist as a teenager, and on one particular case, I watched as she talked to the parents of a teenager who had been diagnosed that morning. The parents struggled to comprehend what was going on, mentioning their disbelief that this was happening to their family - something you only see in the movies.
In the last 25 years, pediatric cancer has become sensationalized.
With the releases of works like The Fault in Our Stars, My Sister’s Keeper, and Me and Earl and the Dying Girl, each book getting its own movie counterpart, one thing has become clear - the public can’t get enough of the familial tragedy. The adaptation of these popular novels into movies allows the same tropes to be delivered to entirely new audiences, often making alterations to the source texts that focus on audience entertainment and engagement at the sake of accuracy.
Cancer’s portrayal in the movies did not always occur this way. There were only 20 films in the 20th century that featured a character with cancer. Even still, 50% of these films featured patients under the age of 30 years old, showing that cancer has been portrayed as a disease impacting young populations since the beginning of its cultural media inception. Films released before the passing of the National Cancer Act in 1970, beginning the ‘war on cancer,’ tended to feature cancer in the sidelines, often withholding the prognosis from patients and alluding to death rather than showing death scenes themselves. However, following the National Cancer Act, the themes shifted to a more accurate and blunt portrayal of cancer in film. 10 cancer films were released in the 1990s, as public perception of health care reform increased.
That brings us to the 21st century. Instead of continuing the progress towards describing an accurate cancer experience, each of the major works released has utilized a slightly different angle and referred to common tropes.
This project analyzes three popular novels, each with film adaptations, released in the 21st century. I used literary and film thematic analyses to look for major themes present in each, as well as differences between page and screen.
The Fault in Our Stars, a popular book released in 2012 with a 2014 movie adaptation, tells the doomed love story of cancer patients Hazel Grace and Augustus after they meet in an adolescent patient support group.
My Sister’s Keeper, published in 2004 with a 2009 movie adaptation, outlines the Fitzgerald family’s fight with their teenaged daughter Anna after she sues for medical emancipation. In this popular book by Judy Picoult, Kate is a teenager with promyelocytic leukemia, and her younger sister Anna is genetically engineered to be a “savior sibling” for Kate, countlessly asked to donate blood, bone marrow, and even a kidney to her older sister.
Me and Earl and the Dying Girl, written by Jesse Andrews in 2012 and adapted into a 2015 movie, highlights the unlikely friendship between high schooler Greg, his best friend Earl, and Rachel, a teenager recently diagnosed with leukemia. They all bond and aid Rachel throughout her treatment.
Together, these three sources each articulate the subtleties of the portrayal of pediatric cancer in the cultural media. Several common tropes define this genre, ultimately creating warped notions of pediatric cancer to the general public.
DEATH
“There should be a statute of limitation on grief. A rulebook that says it is all right to wake up crying, but only for a month. That after 42 days you will no longer turn with your heart racing, certain you have heard her call out your name. That there will be no fine imposed if you feel the need to clean out her desk; take down her artwork from the refrigerator; turn over a school portrait as you pass - if only because it cuts you fresh again to see it. That it's okay to measure the time she has been gone, the way we once measured her birthdays.” - My Sister's Keeper
The most common trope throughout the genre, present in both The Fault in Our Stars, My Sister’s Keeper, and Me and Earl and the Dying Girl, is death. In reality, between 2008 and 2015, the overall pediatric cancer survival rate was 85%. However, a review of over 20 pediatric cancer films found an on-screen survival rate of merely 33%. Although major advancements have been made over the last 40 years surrounding pediatric cancer treatment and survival rates, 21st century books and film still widely depict it to be a fatal disease. A cancer patient character dies at the end of every work described in this analysis.
“Augustus Waters died eight days after his prefuneral, at Memorial, in the ICU, when the cancer, which was made of him, finally stopped his heart, which was also made of him.” - The Fault in Our Stars
The film version of My Sister’s Keeper altered the ending to ensure Kate’s death, despite her survival in the book. This change reflects the need for patients to die at the end of works in this genre, for directors believe it will boost viewer engagement. This increased mortality rate contributes to a victim depiction of patients in the cultural media, as it chooses an interesting story rather than an uplifting, survivorship-oriented one. It neglects the decades of research and does not accurately reflect the patient experience. When I was diagnosed, my parents made me and my brother hug before sending me to the hospital. They were scared we would never see each other again, a fear stirred from their limited knowledge of my minutes-old diagnosis: I very well could die. This trope perpetuates concern, both in the general public and in any family who may be faced with the disease. For older patients, who are not blessed with the young naivety like I was, this deep-set fear can be paralyzing as they realize what could happen to them.
ROMANCE
The trailer for the film adaptation of My Sister's Keeper.
Similarly, the idea that dying teenagers deserve to find true love before their untimely demise has taken over this genre. The Fault in Our Stars was called “the greatest love story of our generation” by Entertainment Weekly, and the book's title refers to a line in the Shakespeare play, Julius Caesar, directly relating pediatric cancer to contemporary themes of romance like the doomed love story. My Sister’s Keeper mostly revolves around the Fitzgerald family dynamics, with the book featuring a small subplot surrounding Kate’s falling in love with a fellow patient. However, another key change in the film is the emphasis on Kate’s relationship, as seen in the movie’s trailer. Showing this subplot so predominantly in the trailer, despite it not being that integral to the book’s overarching plot, highlights society’s gravitation towards the idea of one doomed, final love for adolescent cancer patients. The changes between novel and screen adaptation emphasize the focus on entertainment as opposed to accuracy. This notion of a necessary romance minimizes the impact of the disease on the patient themselves and rather insists that they find peace in a partnership. While Me and Earl and the Dying Girl intentionally chose to deviate from this common narrative, they are not the example of a perfectly accurate story about pediatric cancer, for Rachel still dies dramatically at the end.
“This book contains precisely zero Important Life Lessons, or Little-Known Facts About Love, or sappy tear-jerking Moments When We Knew We Had Left Our Childhood Behind for Good, or whatever. And, unlike most books in which a girl gets cancer, there are definitely no sugary paradoxical single-sentence-paragraphs that you're supposed to think are deep because they're in italics.” - Me and Earl and The Dying Girl
DISEASE TYPE AND GENDER
Gender and disease type were also closely related to pediatric cancer representation in these works. Every novel featured a female patient with cancer, even though statistically boys have higher levels of diagnosis for all the cancer types discussed in these works. Additionally, the most common type of pediatric cancer seen in these novels was leukemia, affecting all patients except Hazel Grace and Augustus, who suffer from thyroid cancer and osteosarcoma, respectively. These depictions of female patients with blood cancer perpetuate the idea of using ‘clean’ cancers for media depiction, a theme also identified in the review of 20th century cancer films. For decades leukemia has been the big screen cancer of choice, as it does not feature any sexual organs nor involve messy surgeries or radiation to cure them. Even though leukemia is the most common childhood cancer, this consistent choice minimizes the wide range of possible diagnoses.
"In order for films to continue to depict ‘clean’ cancers, in young, attractive subjects, leukemia/lymphoma has become the modern movie cancer." -Dr. Robert A. Clark
Additionally, these works defining cancer to be a majorly feminine disease help to stress the common tropes additionally associated with the disease, like romance and victimhood. Gender differences are even expressed in disease burden, for in The Fault in Our Stars, Hazel Grace struggles with many symptoms relative to her cancer, while Augustus displays no symptom burden. After all, even if the girls are a victim to their disease, they can still find life’s purpose in a relationship before their untimely demise. Together, these notions reinforce stereotypes about who a pediatric cancer patient should be and how they should act.
The cultural media serves as an important tool for educating populations about pediatric cancer in the United States and beyond. One study in Poland, a country with significantly higher cancer mortality rates than the rest of the European Union due to misinformation surrounding risk factors, found similar themes of young patients and exaggerated mortality rates in Polish cancer films. This demonstrates how this problem extends beyond popular American literature and film. Cultural media has the power to influence one's perception of someone else's entire cancer experience, or even sway cancer mortality rates in certain countries.
Accurate media is crucial to both increase public knowledge and ameliorate public perception of the disease. This is especially true given all types of pediatric cancer cumulatively receive just 4% of the National Cancer Institute's 7.3 billion dollar budget. Even in non-documentary settings, fictional works have the opportunity to educate and empower. Given the rarity of pediatric cancer, cultural media can provide important context and information about the arduous treatment and its aftermath. For patients themselves, accurate representation can help to fill voids of incongruity among their peers. Recognizing common tropes and consistent themes across fictional pediatric cancer works is an important step in providing accurate interpretations to come and humanizing the experience.