In 2015, I was invited to speak at POGO’s Annual Multi-Disciplinary Symposium on Childhood Cancer on the topic of hope, the theme of the evening. Of course, I was honoured. But at the same time I was filled with worry that I would not do the subject justice. After all, what did I know about hope? Usually when I write it’s about neurosurgery or my cancer research. That’s what I am used to and that’s what I am most comfortable with. It’s never personal, it’s never uncomfortable and it’s never unexpected. I’ve spent a great part of my life learning medicine, with all its beautiful complexities that can be explained and understood through science. I’ve learned to value the things in life that have explanations, can be proven, and follow a predictable pattern. I value them for two reasons. Firstly, I’m being trained as a neurosurgeon and, as a neurosurgeon, I make a living on my ability to prognosticate and intervene, often with only limited information and even less time. Secondly, but most importantly, I value those things that are comfortable and predictable because I did not always have that luxury. I grew up in an environment that could not be explained, could not be rationalized, and was often very uncomfortable—all because I grew up with childhood cancer.
It feels as though I have told my story a million times. The story that shocks my friends, patients, or colleagues when they find out that I grew up with cancer. In all my experiences of telling my story though, the most memorable was when someone asked me, “Are you sure you had cancer?” Surprisingly, it is not an uncommon occurrence. When people look at me, I think they see no signs of someone who had cancer. I don’t have any visible scars, I don’t have any hair loss and I don’t have any physical or cognitive disabilities. To the outsider, I guess I look and act just like anyone else. When I look at myself though, I see a life inextricably shaped by cancer. Cancer is why I became a doctor, it is why I am involved in research, it is why I volunteer for organizations like POGO, and it is why I am on the road to becoming a pediatric neurosurgeon.
In many ways, my life as a cancer patient feels like a dream. Why? Because we can’t explain dreams. They often are so far from reality that they can’t be real and are out of our control. They just happen. Sometimes our dreams can make us happy and so we wish they would last forever. Other times, they can be so terrifying that you spend every passing minute hoping you will wake up. From the day my oncology team told my family and me the news that I had an aggressive leukemia, we spent every day for the next three years hoping that sometime soon we would all wake up.
Three years of chemotherapy and repeated hospitalizations is a long time for anyone, but for an eight-year-old, it’s an eternity. I was always reminded that one day it would be over, that I would go back to school, that I would see my friends, and that I would get to be just like every other person my age who had the freedom to be a kid. But there were so many obstacles along the way. Some days, it felt like the new life that I had come to know as normal, would never end. Whether it was the frequent admissions for febrile neutropenia, the adverse reactions to therapies, or the fear of waking up without my mother and father after each procedural sedation, all I could do was hope. Whether it was the many painful needle pokes, the repeated infections, or the constant worry about the long-term effects of brain irradiation, all we could do was hope. Or, whether it was the news I received that, after three long years of fighting my cancer had returned, all we had left was hope. Whenever I felt powerless, beaten, or scared, there were no statistics, treatment plans or scientific breakthroughs that helped. It was hope and hope only that got me through.
Why did we hope? We hoped because hope was all we had. Hope was all I had. And more than any medicine or procedure, it was the single most important thing we needed and we needed it on a daily basis.
As both a patient and a doctor, I have personally experienced the limitations of science and witnessed the unlimited possibilities that hope brings. When I saw my patient’s family strengthen and come together after the diagnosis of a devastating brain tumour, I don’t think it was just because of our medical care or the success of surgery, it was hope that did that. When I watched my patient with a debilitating traumatic brain injury take his first steps after a month of recovery on a ventilator, I don’t think it was just because of the physiotherapy or supportive care we provided. It was hope that did that, too. And when I witnessed my patient eventually wake from a coma caused by a ruptured brain aneurysm, and kiss his wife, I don’t think it was just because we secured the bleeding vessel. It was hope that made that possible. When the odds are stacked against us, when we are faced with the impossible, and when the world is telling us to give up, that’s when hope is there and that’s when it’s most important.
No matter how big or small our role is in caring for children with cancer, we can all be witnesses and instruments of hope. Most of the time, all that is left to do is recognize it. Then, and only then, will we see that where hope lives anything is possible.
You can follow Dr. Taccone on Twitter @michaeltaccone
Dr. Michael S. Taccone was diagnosed with T-cell Acute Lymphoblastic Leukemia in 1994 at The Hospital for Sick Children and has been in remission for 18 years. He is now a Neurosurgery Resident at the University of Ottawa/The Ottawa Hospital who has a special interest in neuro-oncology and technological advancements especially as they pertain to the pediatric population. Dr. Taccone is actively involved in both basic science and clinical research aimed at improving treatments, experiences and quality of life of patients and families affected by brain tumours. Dr. Taccone sits on the Steering Committee for POGO’s Provincial Pediatric Oncology Plan (2017 – 2022) and also Chairs the Childhood Cancer Survivor Sub-Committee of this long-range planning process. He is the Ottawa Head of the Canadian Neurosurgery Research Collaborative and serves as a member of the Professional Advisory Group for the Brain Tumour Foundation of Canada.