What Teens With Cancer Really Need Now
Since its premiere last month, the feature film The Fault in Our Stars, based on the best-selling novel of the same name by John Green, has been drawing attention to teenage cancer, and the lifestyle challenges of teens with cancer, around the globe. As a former Child Life Specialist at one of the biggest and most well respected children’s hospitals in the world, I had been aware of the problem for quite some time (and couldn’t be more pleased that it’s now getting international attention). I was constantly telling my teenage patients bad news, about everything from diagnoses to missing homecoming games to having to share rooms in packed hospitals with sick two-year-olds who never stopped crying.
According to the National Cancer Institute at the National Institutes of Health, roughly 70,000 young adults between the ages of 15-39 years old are diagnosed with cancer each year in the United States. Even though the medical community continues to make great strides in the diagnosis and treatment of cancer, it still remains the number one killer, when it comes to diseases, of children and teenagers in the United States—more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
You would think with numbers like that, hospitals around the country would know how to treat teenagers and understand how the needs of teenagers are different than those of children or adults. That they’d understand that being a teenager is difficult in general, and then getting a diagnosis of cancer on top of it makes things seemingly impossible. Going through puberty, navigating junior high and high school, formulating plans for the weekend (not to mention for college), and now add in surgery, chemotherapy, hospital stays and being sick all the time? Are you out of your mind?
The sad truth is that most hospitals do not understand what teens want or need. When I worked as a Child Life Specialist, I frequently had to tell 16-year-old cancer patients that, in addition to going through chemo, potentially losing his or her leg—and hair—that we also had no programs or resources for teens. If you were not into balloon animals, toys for tots, or magicians, then we were pretty much fresh out of programming. The hospital rooms weren’t any better, there never seemed to be that opportune moment to ask the 16-year-old if she or he would rather have a Winnie-the-Pooh-themed room for her 9-week stay or if Mickey and Minnie were sufficient. On one especially bad day at work, when I had seen enough disappointed and lost faces of teens with cancer, I made a promise to myself: I would find a way to provide the programming and resources that my teenagers needed and longed for.
Fast forward to 2011. I was preparing for my first ever Spa Day event at a skin clinic in Los Angeles. I had achieved my goal, Wish Upon a Teen, the non profit I had started to help teenagers who were living with terminal and life-limiting medical conditions, was up and running. It was my mission to provide programs and services to the teenagers that the hospitals were not. Not only was I offering Spa Day programs, but also a program I had created called Design My Room, a hospital redecorating program for teenagers undergoing long-term hospitalizations (three weeks or longer). I had launched the program in Michigan and in California, and I was excited to spend some one-on-one time with the girls at Spa Day.
My objective for this event was to do more for the girls than just give them a day of pampering. The goal was to bring together a group of girls who were all in treatment for life-limiting and terminal illnesses. Many of them were dealing with serious stages of cancer, or awaiting transplants. To provide them a safe space where they could hang out, talk, and offer each other support. These girls, due to their medical conditions, were not able to engage in traditional ‘teenage girl’ activities, like hanging out at the mall, sneaking out of their houses or going to formal dances. Instead they were enduring long-term hospital stays, taking mountains of medicine, dealing with rude nurses and doctors who would not actually talk TO them and living with an uncertain future.
I knew that hosting this first ever Wish Upon a Teen event would be accomplishing a life goal for me; what I did not expect was that I would meet someone who would become instrumental to the story of Wish Upon a Teen.
I had never met a teen like Ashley. Her loving nature, her incredible sense of humor and her attitude about her cancer diagnosis and life in general were all unique and inspiring. She was such an amazing teen. After that first Spa Day when we all fell in love with Ashley, she began to take advantage of all the opportunities Wish Upon a Teen could offer.
When Ashley showed up at our 2013 Spa Day, good news was all over her face. Her cancer was in remission. Ashley planned a busy summer, preparing for college and re-learning how to drive a car, since the chemo and radiation had left her with limited mobility in her legs. However, her excitement was short lived. Last summer, after just a few cancer free months, we learned that Ashley’s cancer had returned with a vengeance.
We wanted to help Ashley fulfill her bucket list. In between fighting cancer and undergoing chemotherapy and radiation, Ashley had a list of things that she wanted to accomplish, celebrities that she had always wanted to meet and talk with, including Zooey Deschanel. Ashley asked us if there was any way we could help her reach out to these celebrities, her heroes. Thanks to some of our wonderful friends, we did.
This is how we had the opportunity to meet Zooey and share Wish Upon a Teen with her, as well as her castmates and crew at New Girl. Last fall, Ashley was given the unique opportunity to spend an evening on the set of New Girl as an assistant director, where she was able to talk shop with Jake Johnson and Max Greenfield and ate grilled cheese at midnight with Zooey Deschanel.
These memories stayed with Ashley and her family and provided a wonderful story that she was able to share with her friends and the nurses and doctors who treated her as she entered the hospital for the last time this past December.
Shortly after Ashley passed, I was asked how I was able to continue the work of Wish Upon a Teen when things can get so hard and so sad, how my staff and I are able to continue to provide programming for and work one-on-one with each of our teens and their families, when we know that for a lot of our teens, the future is anything but guaranteed. The answer is that we do it for all of the Ashleys out there. For every Ashley who feels alone in their fight. For every Ashley who wants support, but doesn’t know where to get it. We are there. We are offering that support and we promise you, you are not alone.
Wish Upon a Teen is now recognized as the only non-profit organization in the country that solely works with teenagers with terminal and life limiting illnesses.
To learn more about Wish Upon a Teen or to help us continue our programming, please visit us at www.wishuponateen.org. We invite you to also follow us on Facebook and Twitter.