I am sitting in a brightly lit, modern conference room on the 11th floor of the Seattle Children’s Research Institute, surrounded by strangers, desperately wiping the tears streaming down my cheeks and choking back the sobs threatening to accompany them. It is not the first conference of this kind that I have attended nor is it the first time I have actively engaged with the disease that ended my five-year-old son’s life.
I like to think I swim in the deep end of Sam’s disease. I have listened to doctors present on the intricacies of Diffuse Intrinsic Pontine Gliomas (DIPG), the specific ways in which the cancerous cells entangle with healthy brain tissue rendering it inoperable and subjecting victims to painful and debilitating symptoms that are hard, if not impossible, to treat. I have watched researchers display dozens of charts where individual children, the beating hearts of someone’s family, are reduced to dots, where their lives are measured in months and the result, regardless of treatment, is always the same…death. Shortly after Sam died, I even met one of his oncologists for coffee and listened to her discuss the complex nature and unique features of Sam’s tumor as we stared at MRI scans of his brain, directly facing the monster that took my own beating heart. I remained stoic through all of those experiences. I hate being coddled, especially by doctors.
But the keynote address I am listening to is different. It is not an unintelligible recounting of a particular study’s findings or an optimistic roadmap detailing the steps needed to make progress on a particular form of childhood cancer. This discussion led by Dr. Yoram Unguru, a pediatric hematologist/oncologist at Children’s Hospital at Sinai, is discussing hope. More specifically, he is presenting the different types of hope that families in the cancer world exhibit: hope for a cure, hope for quality of life, hope that the child feels loved, and hope that one can do everything they can for their child.
These concepts have forced me to abandon my stoicism. His talk is putting words to the core of deep emotional struggles I have experienced since finding out my two-year old had terminal cancer, to abstract ideas I have grappled with for more than five years. In doing so, he is validating the hardest choices I hope to ever make. Life and death choices. The choice to sign a DNR. The choice to impose death on our friends and family. The choice to hide Sam’s mortality from him. And the choice to stop hoping for a cure.