Uncertainty seems to be the unofficial theme of 2020. Uncertainty was definitely our family’s theme during Joe’s illness.
When my son Joe was diagnosed with cancer, it was like stepping into a long, dark hallway. Nothing had prepared me for it. It seemed like there was nowhere to turn, nowhere to go. Do we go with the traditional treatment? A clinical trial? Do we act aggressively with surgery or do we move cautiously? There was no clear answer, just more choices.
Joe died when he was twenty. Not even fully legal. He spent a large part of his life in and out of hospitals. He spent a full year dying. And when he did, my family and I thought that would be it. Finally, an end to that journey.
Yet, my son was gone, and I still found myself in that dark hallway. Nowhere to turn, like when Joe was first diagnosed. So, I did the only thing I could. I made a choice.
My choices with Joedance are ones I will always treasure, because they all led me here and to the opportunity to support programs at Levine Children’s. They led to funding the recurrent osteosarcoma clinical trial authored by Levine Children’s Dr. Javier Oesterheld, and they helped fund the Joedance Internship Program that made the Healios project possible, supported valuable research data collecting for inpatient vs outpatient treatments, Supportive Medicine and now brain tumors.
Most of all, though, each summer these choices lead me here, to all of you. To this festival and these talented filmmakers and I get to see, even briefly, all the things my son’s twenty years of life helped build.
There are times I am uncertain, and it is frightening; uncertainty always is. It is a shroud over your senses, a hallway in which you can’t even see the end. But it is also a moment, an opportunity, to make a choice. To take a step. To move forward.
Written By: Diane Restaino, Joe’s Mom