About Hope by Dr. Michael Taccone
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.
Dr. Sean Phipps: Post Traumatic Stress vs Growth in Pediatric Oncology
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.
Still Standing by Jamie Irvine
#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 to the POGO Financial Assistance Program. 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 The Burden of Surviving Childhood Cancer.
I’ll be Home for Christmas by Jamie Irvine
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.
Dr. Christopher Recklitis: Emotional Health After Childhood Cancer
For many patients, the childhood cancer experience takes them away from school, hobbies and friends and thrusts them into the adult world.
In his talk Emotional Health After Childhood Cancer, Dr. Christopher Recklitis stresses the importance of talking to your healthcare professionals about how to maintain balance between regular life and treatment.
Christopher Recklitis, PhD, MPH, is the Director of Research and Supportive Services at the Dana-Farber Cancer Institute and an Assistant Professor of Pediatrics at Harvard Medical School in Boston. He spoke at POGO’s 2013 Survivor Conference: Life after Childhood Cancer.
Straight Talk about Childhood Cancer is POGO’s 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.
Dr. Mike Neal: Male Fertility Concerns for Survivors
Dr. Mike Neal: Male Fertility Concerns for Survivors
One false assumption is that childhood cancer treatment won’t have an effect on fertility. It is important to increase awareness about the options men have prior to and post treatment. Procedures can be easy and inexpensive and can offer insurance to young men who are hoping to have a family down the road.
Michael Neal, BSc. (Hons), MSc is the Scientific Director at ONE Fertility in Burlington Ontario. He spoke at POGO’s 2013 Survivor Conference: Life after Childhood Cancer.
Straight Talk about Childhood Cancer is POGO’s 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.
The Power of Population-based Research
In 1995, POGO’s childhood cancer database (POGONIS) transformed into a fully networked information system. This has allowed us to observe the population, know if certain cancers are increasing in incidence, monitor treatment, follow survival, and understand how these things change over time. In 2004, POGO was designated one of just eight 45.1 entities under Ontario’s Personal Health Information Protection Act, allowing POGO to collect, use and disclose personal health information, including the ability to link its database to other administrative databases, plan for Ontario’s pediatric oncology system and launch invaluable research.
There are multiple study designs, but when we talk about research in medicine, many people think about randomized clinical trials. This type of research can be a very powerful tool when it comes to understanding how X affects Y in a highly selected subset of the population. Drug testing is a perfect example of this. Not every child is eligible for the clinical trial, but the hope is that what we learn from this unique subset we’ll be able to extrapolate to everybody. Of course this is not always the case with clinical trials.
POGO’s database allows us to perform what is called population-based research. This type of study design looks at a population as a whole, in our case all children with cancer in Ontario, and examines what the experience is for everybody. It can help answer questions where outcomes are small and need to be studied on a large scale to understand the answers. Questions like:
For me, population-based research is exciting because it can be just as transformative as biomedical research. The data we have collected in POGONIS, combined with the fact that we can link it to other datasets that are already being collected (Statistics Canada for example), can produce very rich and detailed information that would otherwise be too expensive and/or too labour intensive to collect. It is a very efficient way to utilize all the data that is out there and actually answer questions that can translate more immediately into improved care and better outcomes for the individuals we serve: patients, families and survivors of childhood cancer.
- Dr. Jason Pole
WATCH DR. POLE DESCRIBE HIS RESEARCH: The Power of Population-based Research
READ MORE STORIES LIKE THIS ONE in the 2016 Community Impact Report
Dr. Jason Pole is Senior Scientist with the Pediatric Oncology Group of Ontario and is an Associate Professor in the Dalla Lana School of Public Health, University of Toronto and an Adjunct Scientist with The Hospital for Sick Children Research Institute and the Institute for Clinical Evaluative Sciences, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.
Creating a Happy Home for my Child with Cancer
In 2014, both my husband and I were working long hours at high pressure jobs. It seemed as though our daughter Selena was spending more time with her nanny and grandparents than with us, and she was having behavioural problems at daycare. We made the decision that Selena needed more “mom time,” so I took a leave of absence from my job in women’s nursing apparel and I started working part-time at a restaurant. It paid off: Selena’s behaviour changed 180 degrees in that first year. She was happy and well-adjusted, and I got the opportunity to really know my kid in a way I hadn’t before.
So when our healthy child who never had so much as a cold said, “Mummy, I have a tummy ache,” we didn’t just blow it off like we might have the year before. We immediately took her to a walk-in clinic. The doctor pressed down on her stomach and noticed her liver was swollen. Although he attributed it to an infection, he was still curious so he made a requisition for an ultrasound. And for that, I will forever be grateful.
Selena’s stomach ache went away and she didn’t have a single symptom after that. If not for that ultrasound, they would never have detected a mass or ordered the blood work and CT scan that determined it was cancer. Selena was diagnosed with the worst type of Wilm’s tumour; we were told to get ready for a bumpy road.
Her protocol was experimental and based on yet-unpublished research out of the United States.
Step 1: Removal of her kidney and tumour
Step 2: 13 rounds of radiation
Step 3: 12 cycles of aggressive chemotherapy
Selena’s treatment completely wiped out her bone marrow and she was in semi-isolation for nine months. It was challenging. She couldn’t go to daycare, birthday parties or even the shopping centre. We decided to make home the best possible environment we could and we celebrated everything, from a single poke to the end of a round of chemo. We had a party every weekend with cake and lots of family (screened for even the slightest cold symptom) and the days were joyous and filled with laughter.
This last year was challenging in other ways. I quit my part-time job and managed all of Selena’s medical care. I had already taken a serious pay cut to be home and now I had zero pay, no employment insurance or benefits, and our expenses were rising. My husband worked extra odd jobs so we could get by and our POGO Interlink Nurse* connected us to every resource we were eligible for, including POGO’s Financial Assistance Program.
And now Selena’s treatment is over and she is doing so well. She is excited to start school; I am thankful that I get to return to the same job after being away for two years; and my husband and I are determined to get back on track financially. It will be hard to return to “business as usual.” You get attached to the reality you are in. There is so much readjustment after cancer, but we are looking forward to this next stage in our lives.
- Natasha Koss
WATCH SELENA’S STORY: Creating a Happy Home When Your Child has Cancer
READ MORE STORIES LIKE THIS ONE in the 2016 Community Impact Report
*POGO Interlink Nurses play an important role between hospital visits. They provide excellent nursing support to the family and they work with schools to help them understand the needs of the young cancer patient. 12 cycles of aggressive chemotherapy
Dr. David Malkin: New Approaches in Childhood Cancer
New Cures and Approaches to the Diagnosis and Treatment of Childhood Cancer
Two notable advancements in the diagnosis and treatment of childhood cancers are the science of genomics (how genetic changes occur in tumour cells) and the use of developing cancers in model organisms, such as the zebra fish, in order to develop new drugs to test and translate to human use. POGO Medical Director Dr. David Malkin discusses how now, more than ever, it is important to develop and fund collaborative research groups, across Canada and internationally, in order to catalyze significant leaps forward in the field of pediatric oncology.
David Malkin, MD, FRCSC is the POGO Medical Director and POGO Chair in Childhood Cancer Control and Professor of the Department of Paediatrics and Medical Biophysics, School of Graduate Studies at the University of Toronto. He is also a Senior Staff Oncologist of the Haematology/Oncology department for the Hospital for Sick Children. He spoke at the 2013 POGO Multi-Disciplinary Symposium on Childhood Cancer.
Straight Talk about Childhood Cancer is POGO’s 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.
Dr. Ellen Greenblatt: Female Fertility Concerns for Survivors
Dr. Ellen Greenblatt: Female Fertility Concerns for Survivors
It is crucial for childhood cancer patients to remember that life does go on after cancer. Understandably, fertility is an important aspect of that. Cancer treatments, however, can jeopardize reproductive health, most notably due to certain chemotherapy agents, particularly the class called alkylating agents that can kill off eggs in women and sperm in men. Radiation treatment to the pelvis can also affect ovarian function or the ability for the uterus to carry a pregnancy.
Despite such concerns, Dr. Greenblatt assures young survivors that there are many therapies that are less toxic and that pregnancy after cancer is not associated with a higher risk of abnormalities in children. She recommends visiting a reproductive endocrinologist and infertility centre if you have undergone treatment yourself. While such measures are recommended, Dr. Greenblatt provides a healthy reminder: all women, not only survivors, must think of family planning as planning their family rather than leaving it up to chance.
Ellen Greenblatt, MD, FRCSC is the Medical Director for the Centre for Fertility and Reproductive Health at the Mount Sinai Hospital and Associate Professor of the Department of Obstetrics and Gynaecology at the University of Toronto. She spoke at POGO’s 2013 Survivor Conference: Life after 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.