Our cancer story begins like most: Austen was a happy, healthy 4-year-old girl and we were a generally worry-free family of three … right up until we weren’t. And just like most every other parent, the idea that my child could get cancer, let alone a rare subset like rhabdomyosarcoma, never crossed my mind. In fact, even as we investigated some of her first symptoms, that was the last place my thoughts went. I think part of it is blissful ignorance and part of it is our brain’s way of protecting us until we can no longer deny the truth.
The images, the smells and the feelings of the late afternoon of Monday, Oct. 2, 2017 are indelibly burned into my brain, even more than those from two weeks later when we received an official diagnosis of embryonal rhabdomyosarcoma. That was the first time I ever considered that my daughter could actually have cancer. I had stumbled across possible cancers when playing the role of a Google-certified medical researcher, but that was the highly unlikely worst case scenario.
But as soon as the surgeon said, “The pathologist and I are concerned …” I knew, in my gut, that somehow, we had indeed ended up with the worst case scenario as our reality. The rest of his words are a blur, but the inability to look my husband in the eyes, running to the restroom to get sick and the anxious pacing until I could see my little girl’s face come safely back from what we thought would be a simple polyp removal are all crystal clear.
It is a collection of moments that I deeply wish no other parent ever had to endure, but now know is all too common, even though pediatric cancers in general are considered rare.
Another pivotal moment during the last several months was when my husband said, “We could always start a foundation.” Right then, everything started to make sense. I received not only the answer to the question, “Why my child?”, that every cancer parent inevitably asks, but also saw an extraordinary alignment of my personal and professional purpose and passions. Austen’s Army Foundation was born in that very instant.
I sheepishly admit that I was contentedly disconnected from cancer, childhood or otherwise, before Austen’s diagnosis. Adults in my life had fought and even died from different types of cancers but not until it was my child did the magnitude of this disease truly sink in. I certainly felt badly when I saw commercials or heard third-party stories but it’s simply one of those things that you can never truly understand until it happens to you.
As I became painfully familiar with cancer through research and getting to know other families, I was very surprised about what I learned concerning the lack of funding and awareness of childhood cancers as a whole. When in fact, I had been a prime example of being unaware. I had never heard of my daughter’s cancer before her diagnosis. In fact, neither had any of our family members or friends. My eyes were forced wide open and I promised to make it my mission to help open the eyes of others regardless of whether they were parents and before they too were forced.
I don’t wish the agony of first-person experience on anyone, but I do wish to end the luxury of being unaware for everyone. We all need to know. We all need to care. We all need to be connected.
Finally, you may wonder why are we laser-focused on rhabdomyosarcoma when there are many childhood cancers that need increased awareness and funding. Aside from the obvious personal reason, what I have learned about rhabdomyosarcoma is downright alarming. It is aggressive, needs to be attacked with equally aggressive treatments (which lead to a whole host of short and long-term side effects) and it likes to come back.
With only 350 cases diagnosed in the U.S. each year, it naturally receives less airtime and less funding than some other childhood cancers. The competition for grant money is fierce and the money often goes to research that is believed to benefit the most people. We thought rhabdomyosarcoma deserved more dedicated efforts so that the public knows this disease even exists and in turn, are motivated to contribute to research efforts.
We may be committed solely to rhabdomyosarcoma, but we wholeheartedly appreciate and support the work of all the organizations that have come before us, regardless of the cancer they champion, because in the end, we need to find a cure for each and every one of them. And, so here we are, doing whatever we can to help.