Why I'm "Going Gold" for child cancer awareness

September is Childhood Cancer Awareness Month. It meant little to me or my family a year ago.

But 10 months ago, my son Ryan was diagnosed with medulloblastoma, an aggressive, Grade 4 central nervous system brain tumor.

Ryan was your typical, energetic, sweet five-year-old just before his diagnosis. A big baseball fan and heck of a little athlete. Things are different now.

It is difficult to effectively characterize what Ryan has endured throughout the past 10 months. Here are some numbers that tell the brutal story:

More than a dozen doctors have treated Ryan in 3 different hospitals. A 9-hour surgery left my son unable to speak for 3 weeks or walk for 3 months. He has undergone 30 cranio-spinal radiation treatments, several additional surgeries for cancer treatment complications, and has been under general anesthesia more than 50 times. He has logged almost 100 days in the hospital and is currently undergoing 9 cycles of chemotherapy, which will last through early 2017.

There is a 60 to 70 percent chance Ryan will be alive and free of disease four years from now. If he can beat those odds, he is facing a lifelong set of disabilities caused by the treatment required to kill the cancer cells.

A longitudinal study recently released by St. Jude's Hospital shows that Ryan — like so many other pediatric patients with his type of cancer — has a 95 percent chance of experiencing three or more life-threatening illnesses resulting from treatment before he turns 35 years old.

Initially, I didn't want to "Go Gold." Awareness campaigns are challenging, and unless they are both broadly and aggressively executed with a strong call to arms for funding, they ultimately fail to meet the objective. The percentage of federal cancer research funds allocated to kids has sat at a stagnant 4 percent for the past 10 years. Many advocates point to a lack of profits for drug companies. The effectiveness of nonprofits filling this gap is dependent upon an engaged and passionate survivorship base. Transition from awareness to advocacy is a high hurdle. There are few adult survivors of pediatric cancer and parents of cancer kids live in survival mode without reserves.

During the past 20 years, the incidence of invasive pediatric cancers has increased by 29 percent, and last year only $26 million was allocated to the National Cancer Institute for funding to eradicate pediatric cancer. Sadly, the mainline of defense responsible for protecting our children, our elected representatives, continue to fail us on this issue. The Childhood Cancer Survivorship, Treatment, Access, and Research Act currently sits stagnant in Congress.

Pushing past my anger at the lack of Congressional action, I've decided to "Go Gold" in honor of Ryan and every other child struggling to stay alive because, however imperfect, it matters. Even the smallest gesture has an impact and contributes to ending this curable disease.

Children cannot advocate for themselves, and no parent should ever hear the heartbreaking words, "Your child has cancer."

Childhood Cancer Awareness Month meant little to me and my family a year ago. Now, participating in it — and encouraging our elected officials to act — is part of a hope parents of children with cancer must believe in and support. 

Nick Etten

Business executive and health care advocate