According to Cancer.net , there is a cancer awareness campaign nearly every single month of the year. Some months, like September, have multiple campaigns for different types or categories of cancer.
For me, September represents just one thing — Childhood Cancer Awareness month. Our color is gold. My daughter was diagnosed with cancer seven Septembers ago at the age of 11. She died from her disease two years ago at the age of 15.
My focus (along with so many other desperate parents) is on generating awareness of the lack of funding for childhood cancer. We don’t just want you to know that children get cancer. We want you to know that we (as a country) are not doing enough to save our kids. Yet it can be difficult to get people’s attention even with something as horrific as childhood cancer.
September is also blood, gynecologic, ovarian and thyroid cancer awareness month, after all. It’s back-to-school month. It’s the start of football season. How can we stay focused on childhood cancer, and the pressing need for better and more effective treatments, amidst the sea of pink, orange, green, blue and teal ribbons ?
To complicate things, childhood cancer is a blanket term that doesn’t begin to cover the true scope and complexity of this illness.
According to St. Baldrick’s, an organization devoted to funding childhood cancer research, there are over a dozen kinds of childhood cancers, and countless subtypes, which makes finding one broad “cure” kind of a misnomer.
We need research, we need multiple treatment options, and we need them to be age appropriate. All of this takes funding.
I don’t have to see a gold ribbon to remind me that kids get cancer or wait for September to (obsessively) read stories about children with cancer.
Kids like Dorian Murray who died when he was 8 after being diagnosed at age 4 with a rare type of sarcoma. 4. He wanted to be famous in China and the internet helped make that happen, but as a “cancer mom,” my focus was on the rest of his story, so similar to the many other children diagnosed with this disease.
After years of brutal treatment and with cancer in his spinal fluid, Dorian decided to stop treatment knowing full well that he would die. After his death, his parents launched a foundation in his name, The Dorian J. Murray Foundation, to raise awareness about pediatric cancer and support new research to help find new treatments.
Stories like Dorian’s ebb and flow in the media — bringing us briefly into the appalling world of childhood cancer — until we move on once again.
Well, not all of us…
Gold ribbons remind me of one maddening fact: childhood cancer research is grossly underfunded.
Only 4% of the federal cancer research budget is allocated to finding a cure for childhood cancer. There’s even a campaign focused on changing this statistic, complete with its own hashtag — #MoreThan4.
In the 1950s, a cancer diagnosis was a death sentence for a child. Today, it’s a life sentence. It often involves years of painful treatment. There is no easy way to rid a child of cancer. Surgery, chemotherapy, radiation, immunotherapy — all of it is hard, some of it is lethal, and most of it leaves scars.
A 2013 study from St. Jude’s Research Hospital found that nearly 98% of childhood cancer survivors (almost ALL of our children who are diagnosed with cancer), will have at least one significant health-related issue when they reach adulthood. This same study found that by the age of 45, 80% of study participants had at least one life threatening, serious or disabling condition.
My daughter fought cancer for over four years. When chemotherapy didn’t work to shrink her original tumor she got a liver transplant. When her cancer came back, she went on targeted chemotherapy, then had radiation, then had more surgery, then more surgery and even more radiation. She knew she was dying.
She knew we couldn’t save her.
In spite of the groundbreaking technology that bought precious time for my daughter, cancer is still the leading cause of death by disease past infancy in the United States.
The National Institute of Health (NIH) estimates that nearly 16,000 kids (roughly 44 each day) between the ages of 0 and 19 are newly diagnosed each year. Nearly two thousand kids will die from the disease each year.
Maybe these numbers aren’t high enough to warrant more than 4% of funding for research that could ultimately spare our kids pain, suffering and death. Numbers are easy to dismiss unless you’re the one whose number is called.
So let’s call it what it is.
Pediatric cancer is a lottery.
The moment we have children, they are entered into this lottery. No baby, child or adolescent is given a free pass. Age, sex, skin color, religion, financial status — none of these exempt your kid from the lottery.
Every day, 44 children in the U.S. draw a losing ticket. Every year, 16,000 children — from birth through age 19 — lose the lottery and begin an uphill struggle for survival.
Maybe we’re still allocating just four percent of the NCI’s multi-billion dollar budget to pediatric cancer research because we think we’re doing a good job.
Maybe childhood cancer research gets such a small percentage of the pie because the people who sign off on the budget lack firsthand experience with losing this lottery. They haven’t had to look into the eyes of a pediatric oncologist who has run out of answers. They haven’t had to sit down, take their child into their arms, and explain that there is no medicine in this world that can save them.
Today, forty-four children in the United States will have their ticket called. These kids will be ripped from childhood and brought into the brutal world of cancer treatment.
Tomorrow, forty-four children in the United States will have their ticket called. It could be your niece, your cousin, your grandson, your child’s best friend. It could be your child.
If we continue to rely on only 4% of government funding, then our children will continue to suffer and die. If we assume pharmaceutical companies will discover the breakthrough therapies that can potentially save our children, we’ll wait forever . While pharmaceutical companies contribute about 60% of funding for drug development in adult cancers, they donate almost nothing to develop new cancer drugs for children.
Four percent is not enough. Make your voice heard. Write about it. Tweet about it (use the hashtag #morethan4). If you have a platform (I’m looking at you, Empire State Building), then use it to amplify our message. Our kids are worth more than four percent.
A version of this story was published on HuffPost.