In preparing to interview Stella, I knew quite a bit about her medical history.Her mother,Jen, has been documenting Stella’s cancer on both Facebook and on Carepage.com in updates that often include devastating descriptions and heart-breaking images.
What I didn’t know, and wasn’t sure about managing, was how to question a child about a cancer that has debilitated her body and threatened her life without seeming insensitive, or even disrespectful.
On our appointed interview day, as I approached the Usiak’s home Jen met me outside. I took the opportunity to inquire if there was anything about Stella’s diagnosis or treatments that I shouldn’t address? Jen’s answer demonstrated the remarkable nature of this family.
“Stella is pretty open about everything and we talk about her cancer honestly. We think it’s important that people see and understand how hard it is for her and other children like her. That’s why I take the photos of Stella in the hospital and she agrees to share them, so that people can see the real cancer.”
For the ensuing two hours, I sat across from this young girl with no hair, a distended and swollen body, and a mind that can’t always
recall the details of her life. We talked about the pain of her disease, the punishing medical treatments that both hurt and help and the isolation of having spent half of her life in hospitals.
At one point Stella showed me her beads of courage, lengths and lengths of colored beads given by the hospital staff as rewards for enduring medical exams, treatments and procedures. She values them as badges of courage, which no doubt they are.
Finally, as we came to the end of our interview, our conversation turned to death, Stella’s death, a reality this twelve-year-old has faced for more than 5 years. While tears welled in my eyes and fear filled my heart, Stella earnestly spoke about the importance of helping others and doing the best to enjoy life and have fun when you can.
No matter where this project takes me or the people that I meet, the remarkable Stella Usiak will remain a strong reminder of all that 64 and More is meant to be.