POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award. In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years.
According to Marilyn, “One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community, that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians, with a wonderful perspective on the family experience during treatment.”
Marilyn’s nominators had this to say:
Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her.
Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.
She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.
Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.
Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.
As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.
Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.
POGO Interlink Team Leader
When I was six years old, my family moved from Saudi Arabia back to Canada. Coming from the desert, I had never experienced winter before, let alone this otherworldly-like game called hockey. I was immediately hooked.
I had great dreams of one day joining the NHL myself, dreams that were quickly dashed after my first attempts at learning to skate resulted in such highlights as me crashing into walls while trying to stop and throwing up after drinking too much hot chocolate. Soon my passion focused on collecting hockey cards and watching the game on TV. It was my personal goal to collect every card or watch every game that even mentioned Wayne Gretzky.
When I was 10 years old, I was diagnosed with acute myeloid leukemia. To say that my early days of treatment were difficult would be a gross understatement. In truth I was defeated and had given up hope. Then one day, out of the blue, I received a call to my hospital room.
“Is this Jamie Irvine?” said the male voice on the other end of the phone.
“Yes,” I said.
“This is Wayne Gretzky.”
And so the conversation began, lasting between 5-10 minutes, but honestly everything is a blur after he said his name. I was in pure euphoria.
A few weeks passed and I received a care package in the mail from Wayne himself. It was full of signed pictures and various other goodies. All of which I still treasure to this day.
Pretty cool story, right? Well it doesn’t end there. A few years later, my family had moved to Newmarket, Ontario, and I had just finished an experimental treatment and was given the all clear. I attended Camp Oochigeas that summer and met a man named Gordon (Gordo) MacKay. He happened to share my passion for all things Gretzky and after I told him my story, he revealed that he had helped design Wayne Gretzky’s restaurant in Toronto. He invited my family to a free meal at the restaurant and I was shown the “secret” storage room full of Gretzky memorabilia. Gordo let me try on some of the Gretzky jerseys and gloves while my brother got to try on some of Michael Jordan’s game worn shoes. Fun fact: Wayne Gretzky and Michael Jordan would occasionally exchange skates and shoes.
For me, Gretzky’s title “The Great One” goes beyond his hockey record. He was willing to reach out to a sick child who was feeling defeated and offer the support only a hero like him could provide. And for that, I am forever grateful.
To this day, Wayne Gretzky remains my favourite player of all time and my passion for hockey has not waned. Of course, these days I cheer for our home team.
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.
The traumatic stress model starts with the assumption that cancer is a traumatic event, and people often think of children with cancer as having depression or post-traumatic stress. But that is not always the case.
Dr. Sean Phipps and his team discovered that for some survivors their personal function actually improved as a result of their cancer experience.
Sean Phipps, PhD is the Chair of Psychology at St. Jude Children’s Research Hospital in Memphis, Tennessee. He spoke at the 2013 POGO Multi-Disciplinary Symposium on Childhood Cancer.
Straight Talk about Childhood Cancer is POGO’s new series of video shorts featuring the insights of experts whose leading-edge work impacts the care, treatment and quality of life of childhood cancer patients, survivors and their families.
In November 2016, POGO welcomed Dr. David Hodgson as its new Medical Director and Chair in Childhood Cancer Control. Here are Dr. Hodgson’s remarks on the occasion of his welcome reception at the University of Toronto’s Massey College.
In the summer of 1989 I came to the Associate Dean’s office, about 800m from here, for my medical school admissions interview. At that time, admissions interviews were done after the med school applicants had already accepted, so the stakes were low.
We discussed undergraduate experience, my hopes for medical school, and after about 20 minutes, the Dean asks me, “Are you excited about going to medical school?” I said, “Sure, why do you ask?” He replied, “Well you don’t look very excited.” I told a friend in grad school about this and he said I should have answered, “Are you excited about being Dean?” But I didn’t say that, which in part is why I’m here today.
I learned a lot in medical school, but of course many of the most important lessons were learned afterward, and two in particular I’ll mention today.
Only after some time in practice did I learn the first lesson, which was to appreciate how scared our patients and their families are. The writer James Hollingsworth wrote, “Courage is not the absence of fear, but rather the judgement that there is something more important than fear.”
And what greater fear could there be than to have what one values most – one’s life, or even more so the life of one’s child – taken away? Imagine how it feels to give a group of strangers permission to surgically remove parts of your child’s body, irradiate them, and give them so much chemotherapy that their bone marrow is wiped out, saved only by a plastic bag of stem cells kept in a freezer. But every day we have the privilege of helping families who give us permission to do exactly that, with incredible courage, because they work towards something more important than their fear: a normal healthy life for their child.
The second lesson is that it’s harder than I expected it would be to be a good doctor; to consistently provide high quality care. Now, fortunately, we work in a system that for the most part facilitates good care, and one only needs to talk to our counterparts around the world to see how lucky we are to work where we do.
But our knowledge is incomplete, our treatments imperfect, our resources limited, and we battle inefficiencies and bureaucratic absurdities that can wear us down. Too often we are not able to deliver the healthy life that our patients and their parents hope for.
That is why the work of POGO, in collaboration with the tertiary care centres and satellite clinics that make up the pediatric oncology system, is so important. Work to roll out new treatments in a timely and equitable way, to provide financial support for families being crushed by out-of-pocket costs, to offer academic and vocational support for survivors to succeed long after treatment is over, and to conduct research to further improve system performance. This is critical work that POGO does that benefits patients for sure, but make no mistake, also benefits everyone in this room trying to reduce the burden of childhood cancer care in Ontario.
So I’d like to say that I am very excited to do my part to help with this important work – work that strives to be worthy of the courage of our patients and their families, and that allows us to provide the kind of care we aspired to give when we started school.
And Dean Young, just so you know: this is what it looks like when I’m excited, in case you didn’t recognize it.
— Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control, November 28, 2016