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Dear Mom by Jamie Irvine

It’s hard to believe that it was 21 years ago when I was diagnosed with acute myeloid leukemia. Like many families, you and Dad had to “split responsibilities” to take care of the family, so while he continued to work, you spent your time in hospital with me or at home with Ben.

To say my treatment was rough would be an understatement. As my cancer was caught late, doctors gave me a 55% chance of survival at best. Being the type of kid I was, I made you promise to tell me if I was going to die, and then the day came when you had to keep that promise. A new doctor misread my chart and told you I only had days to live. I found out years later that you spent an hour outside my room with the unit social worker trying to figure out how to break it to me.

Later, in treatment, I became allergic to random donor platelets and because you were the closest genetic match, you provided every single transfusion for the rest of my three-year hospital stay. It got to the point where your arms became so covered in bruises that the hospital had to monitor how much you had given. You also became my bone marrow donor, which I know was one of the most painful experiences of your life. It didn’t end there though.

Just before my second bone marrow transplant, I developed that sudden “bone pain” and the hospital gave me a morphine drip to help cope. Unfortunately, this drug didn’t make me happy or drowsy like with other patients. Instead, it completely changed my personality and made me very angry and hostile to everyone. I would scream and threaten anyone that came into my room. Worst of all, I would scream at you. I would tell you how “I wish I would die,” or worse, how “I wished it was you instead of me.” I don’t remember much of that time in treatment but I do remember that you would just take all the verbal abuse I dished out. Instead of lashing out or fighting back, you would tell me how you wished you could take on all of my pain. Years later, you told me that you asked the social worker why I would say such things. They told you that I knew (subconsciously or not) that you would not abandon me. It must be true because you are still here supporting me.

Throughout those dark times, you still cared for and spoiled me. When I was wasting away from lack of nutrition, bald from chemo and had a feeding tube dangling from my nose, you still took me out on day trips to my favourite comic or video game store. You must have given the evil eye to anyone who looked at me funny because no one ever said anything. I even remember when you spent a whole month tracking down that one rare video game that I just had to play.

To this day, I still don’t know how you found the strength and courage to manage. I don’t think a normal person could go through all that and still offer the loving support and care that you did. I don’t know if I will ever be able to have children (due to the treatment I went through) and at this time I’m still too scared to find out. But I know that even if I’m able to show them half of the love and strength that you continue to show me, I will make one hell of a parent.

I’ll love you forever,
I’ll like you for always,
As long as I’m living
My Mommy you’ll be.

-Modified from Robert Munsch’s Love You Forever

Love Jamie


A Call from Greatness by Jamie Irvine

In the spirit of playoff season, I want to share my little brush with hockey fame when I was going through cancer treatment at just 11 years old.

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.

#GoLeafsGo!


About Hope by Dr. Michael Taccone

Dr Michael Taccone_Symposium 2015 emceeIn 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.

 

 

 

Still Standing by Jamie Irvine

Jamie holding one of his TWO diplomas with honours

#BellLetsTalk #mentalhealthawareness

My cancer was discovered late. Doctors estimated that even with a bone marrow transplant my odds were still only 55% at best.

Three years of treatment (including two failed bone marrow transplants) resulted in a plethora of late effects: cataracts, preset osteoporosis, stunted growth, damage to my pancreas, changes in my skin pigmentation and a few others. That said, for me the worst part was not the effects on my body but the mental impact of it all. There was the feeling of isolation that came with being a kid in cancer treatment during my formative years; the fear of relapse and believing I was just on “borrowed time”; the self-deprecating thoughts that I didn’t earn my grades, my teachers just pitied me; and finally, the guilt of surviving when others did not.

Many of us childhood cancer survivors know at least one person who did not make it. I actually know a few but the one who stands out for me is Andy. Andy came to our school in grade 10 after just having finished treatment for leukemia. I thought we would bond over our shared cancer experience, but it turned out Andy wasn’t interested in talking about his illness. Still we became fast friends. In grade 12 when he relapsed, doctors gave him a low chance of survival. He decided to forgo treatment and within a few months, Andy passed away. I remember when I got the news one of the first things to pop into my head was, “I wish it was me.” To this day, the guilt of that being one of my first thoughts has etched itself into my brain and soul.

When high school ended, I decided to push the negative thoughts deep down. At that time, I decided to go to college for social work. I often tell people that I chose the field because I wanted to give something back for all the help I received. In reality that is only partially true. The other reason was that I wanted to make sure no other kid turned out like me.

After completing a Bachelor’s in Social Work from Carleton University, I was only able to get part-time work. I was seriously underemployed and despite my efforts, had difficulty launching a full-time career. All of those negative thoughts started to bubble to the top. The voice in the back of my mind told me I was broken and worthless and within a short period, I started to believe it. I secretly wished that I had died during my treatment or that I would develop a secondary cancer. I had hit rock bottom.

It was during a routine checkup at Princess Margaret Hospital that I met a nurse practitioner who sensed something was off and asked some questions. It was the first time in years that someone in the healthcare field seemed to care about my mental state (not just the physical) and it just all came bursting out. She recommended therapy and gave me the contact information for the survivor care program at POGO.

With a few months, my confidence started to grow. I was volunteering at POGO and I started to get interviews with government agencies and major non-profits. Even though I was not hired, I always received great feedback and was often told that I was within the top three final candidates.

Soon a position opened up at POGO and I was recommended for the job. To my surprise, I got it and now work as an Administrative Assistant for POGO’s Financial Assistance Program and Education Events. Even though I still have moments where negative thoughts creep into my mind, I feel as if this is where I belong and thanks to my supervisor and the other POGO staff, I continue to grow both on a personal and professional level.  

I now know that I am not worthless and broken. And although treatment has left me physically and mentally battered and bruised, I am still standing.

For more on survivor guilt read Leanne Brown’s story on page 23 of POGO’s 2016 Community Impact Report

I’ll be Home for Christmas by Jamie Irvine

Christmas in the hospital

Christmas in the hospital

When I was diagnosed with leukemia at age 11, doctors said that my odds were only 55% at best. After two failed bone marrow transplants, I had what was then an experimental treatment called a lymphocyte transfusion. This meant that in total I spent around three years of my life in and out of hospital, which of course means I spent a number of birthdays and various holidays confined to a hospital bed listening to the gentle hum of my IV pump and the occasional mention of a code blue over the hospital intercom.

This story takes place a few months after my 2nd bone marrow transplant. My family and I had just moved from Edmonton to Newmarket and I was transferred to SickKids hospital.

I’ll be home for Christmas
You can plan on me
Please have snow and mistletoe
And presents by the tree
-Bing Crosby

First off let me provide some context for those of you who might be unaware of what goes on during and after a bone marrow transplant (at least according to my experience). Before the transplant the goal is to make your blood counts a blank slate with the intent of getting rid of whatever may have triggered your cells to become cancerous in the first place. This of course means that your white blood cell count is now non-existent…which means your body now has no way of fighting even the simplest virus. With no immunity left to speak of, patients are placed in “isolation rooms”. Think the boy in a bubble…but with a room. Once the conditions are right, and with fingers crossed, the patient is then given their bone marrow transplant.

If things go well, the patients’ blood counts start to rise and eventually they are moved out of isolation and into a regular room. In my case, my mother was my bone marrow donor and one day I awoke to see she had posted a sign in my room that said “Every day, in every way, I get more and more like my mother.”

I was not impressed.

Weeks passed as they often do and I was moved out of the isolation ward and placed in a regular in-patient room. It was now getting close to Christmas and my family started to ask about the possibility of me going home for the holidays. Unfortunately, things didn’t look good. My counts were below the hospitals required minimum levels. December 25th crept ever closer and the results were still the same. December 21st, 22nd and even the 24th passed and though my counts had increased they still had not reached the desired levels.

On December 25th we asked (maybe begged would be the better word) the hospital staff if it would be possible for me to go home and the answer was still no. So my mother, father and twin brother spent the day in hospital with me, waiting and waiting. Eventually, at around 4 pm, my counts came back…just barely meeting the minimum requirements, but just enough for staff to let me go home. Nothing was prepared and it was too late to make the traditional Christmas dinner. So while my brother and I fished out the Christmas crackers, my mother quickly whipped some spaghetti. All in all, I have to say that it was the best and most memorable Christmas I’ve ever had.

(The previous year when I was “high” on morphine due to bone pain, I told an Edmonton Eskimo player dressed as Santa to get the heck out of my room…that Christmas is a close second.)

Was it a Christmas miracle? I can’t really say, but unlike Bing Crosby’s song it wasn’t only in my dreams.