About four years ago, I started taking pictures of sick kids. I look for smiles in hospital rooms and look past IV poles in hopes of capturing the fleeting moments of carefree childhoods that exist alongside tragic diagnoses and crippling test results. I look for little hands grasping onto hospital beds as toddlers take their first steps in brightly decorated triage rooms. My heart skips a beat when I see an older sister smile at a younger sibling, knowing that siblings, too, suffer when their loved ones are sick.
Please don’t ask me why or how I do it. (If you insist on knowing, I will tell you that offering these pictures is nourishing to my soul.)
Please don’t tell me that it must be so sad. (Of course it is. But it’s also incredibly rewarding and beautiful.)
Instead, please ask me what you can do to help kids like Phoebe.
In the age of social media, it is easy to run across pictures and stories of kids facing devastating odds and feel helpless. As I stood by Phoebe’s bedside that day, I felt that way, too. Phoebe had been recently diagnosed with DIPG, an aggressive brain tumor. While there are treatments to improve her quality of life, the long-term prognosis is tragically grim.
Only 4 percent of all cancer funding is earmarked for childhood cancer research. And in the past 20 years, only three new pediatric cancer-specific drugs have been developed. This month, when you see pictures on Facebook reminding you that September is childhood cancer awareness month, please don’t just get sad. Get involved.
Here are four things you can do this month to help kids like Phoebe.
1. Call your representatives in Congress. Tell them that you care about cancer research legislation. Learn about federal cancer programs. Ask your representatives to participate in the Childhood Cancer Caucus, “a clearinghouse for information on pediatric cancer and a forum to aid Members of Congress in working together to address pediatric cancer.”
2. Participate in childhood cancer awareness and advocacy foundations. Give money if you’re able. Many organizations help cancer patients and survivors develop important allies in the fight against childhood cancer. As the St. Baldrick’s Foundation explains, “Childhood cancer drugs aren’t very profitable for pharmaceutical companies, which is why so few have been developed. But as a result of the childhood cancer community’s united advocacy efforts, the Creating Hope Act changed that, offering companies vouchers to expedite the development and approval of these drugs.”
3. What is your superpower? Medical providers offer the crucial life-changing support to children battling pediatric cancer. But consider if there is some special talent that you have to offer these families. Whether you are a great cook, a decent photographer or a gifted party planner, families can really benefit from your services.
4. If you know a family battling pediatric cancer (or other life-altering challenge), consider offering to help in specific, concrete ways. Helping doesn’t require a huge commitment or some unique talent. And while general offers to help are appreciated, it can be difficult for a family to ask you to help with a specific task. Instead, consider the daily things most families do – food shopping, cleaning, picking up dinner – and offer to complete that task. Or if you know something that the child really likes, consider creating opportunities for the child to have a magical experience during the days in between treatment. For example, kids who love animals might really like free tickets to a zoo, kids who adore cooking might be wowed by having a chance to cook with a talented chef. And parents who are completely and utterly exhausted might appreciate a pre-paid night out to dinner and a movie – child care included.
Last summer, I was asked to talk about my experiences working with chronically ill children and their families. And while I am a former litigator-turned-law professor, I struggled to find my voice. It wasn’t until the very end of the talk, when the parents of these children addressed the audience, that I finally heard the words I was hoping to say. Phoebe’s dad, Cole Dooley, a physician and the founder of Face Kids’ Cancer, stood up and addressed the crowd. “Please don’t feel sorry for me,” he pleaded. “Get angry. Get involved. Demand better funding for childhood cancer research.”
I want the world to see that these families are real, that they are local, and that most of all, these families need our help. This month, and always, please don’t just feel sorry for children battling pediatric cancer. Get mad at the realities these kids face. Then do something, because you can.
Stacey Steinberg, J.D. is a legal skills professor at the University of Florida Levin College of Law. She is also a photographer. You can view Stacey’s work by following her on Facebook and Twitter @sgsteinberg, or by visiting her website.
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