Blog
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 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.
Student Perspectives on the 2016 POGO Symposium
The 2016 POGO Symposium on Childhood Cancer examined clinical and scientific advances in the diagnosis and treatment of leukemia in children and adolescents. This professional education event attracted an exceptional roster of internationally renowned childhood cancer healthcare practitioners to present on this topic, and scores of delegates—practising and emerging professionals alike. Among the latter were seven undergraduate and post-graduate students who attended on bursaries and subsequently shared their learnings and inspirations from this year’s event.
Here are excerpts from their recaps.
Networking at the POGO Symposium
“As I begin my graduate career, the opportunity to speak with scientists, nurses and allied health professionals in the field was incredibly helpful. I was informed of the variety of specializations I could follow, was given advice for career development, and started a network of connections to work with. Learning more about current research, and speaking to experts who share similar passions for their work, was incredibly inspiring! I left the Symposium feeling motivated in my work and connected to an amazing community of equally passionate healthcare professionals!”
-Jacqueline van Warmerdam, MSc Candidate, The Hospital for Sick Children & The University of Toronto
“Throughout my experience at the POGO Symposium, I was able to meet other nursing students, nurses, nurse educators and nurse managers. I was fortunate enough to sit at a table with a few oncology/haematology nurses that currently work at SickKids and was able to ask a lot of questions about their experience. I am excited to learn more as I pursue a career as a pediatric oncology nurse and look forward to future POGO Symposiums.”
-Mackenzie Heath, Bachelor of Science in Nursing, Year 4, Western University
“This conference provided me with the opportunity to network with nurses who work on the unit which I aspire to work on, as well as be introduced to the unit manager of the unit which I hope to work on upon graduation. This conference provided incredible networking opportunities as a student nurse, and I was able to learn from my future RN colleagues and gain their insight into the coming months leading into my career.”
-Kealey Clarke, Collaborative Bachelor of Science in Nursing Program, Year 4, Western University/Fanshawe College
The Multifaceted Field of Pediatric Oncology
“Although leukemia brings many challenges, the conference emphasized the successes and acknowledged how far the field has come in terms of cure rate which was amazing to learn about. Dr. Nina Kadan-Lottick gave a wonderful talk on managing behavioural treatments that are observed during treatment. She emphasized the importance of quality of life and how this includes mental health. She talked a lot about providing psychosocial support and how there are upcoming interventions that are used to help provide that support to youth who may be experiencing anxiety. Dr. Sharon Guger discussed how leukemia is having impacts on attention, memory and learning and how this can impact quality of life post treatment. Another major area of focus was on future research and future targets for leukemia treatment. One talk that stood out the most was Dr. Stephan Grupp who discussed CAR-T Cell Therapy. This talk was full of innovation and demonstrated the future direction of leukemia treatment. Overall, the Symposium provided an educational, interesting and innovative series of talks that really impacted my knowledge and education surrounding the topic. I always love how the Symposium has a variety of speakers that cover many different perspectives. It shows the multidisciplinary approach to pediatric oncology and makes the field so unique.”
-Nini Nguyen, Bachelor of Health Sciences (BHSc), Child Health Specialization, McMaster University
“I specifically enjoyed the sessions on the psychosocial aspects of cancer treatment, with an emphasis on the family. The discussion on sleep habits during treatment of both parents and the patient was of particular interest to me. I also enjoyed the session on managing behaviour changes during treatment. I felt empowered by the specific nursing interventions that were suggested with respect to post-treatment distress in families undergoing childhood cancer treatment. This helped solidify one of the main messages I took away from the conference which was the quality of the cure…I feel very fortunate for this opportunity and look forward to attending the Symposium as a registered nurse next year.”
-Lisa Delanghe, Bachelor of Science in Nursing, Year 4, University of Windsor
“The presentations taught me a lot about where we stand in the fight against childhood cancer. In particular, I found the opening talk by Dr. Sallan to be an engaging and informative start to the conference; this talk was the best way for someone without a lot of leukemia expertise to be quickly updated and set up for the other talks. I learned a lot about precision medicine which inspires me in my future goals to combine clinical practice with molecular research. Dr. Nathan’s talk on the late effects of childhood leukemia really helped me to understand the unique nature of childhood cancers and to comprehend the importance of reduction therapy and survivor care. The poster sessions were very helpful as I had the chance to share my summer research with healthcare professionals, receive their input and hone my presentation skills…I even got to see the results of studies I myself had participated in.”
-Hayley Insull, Bachelor of Science in Biochemistry, Year 2, McGill University
“Without a doubt, the highlight of the weekend was being able to learn, first-hand, from world experts in the field of oncology. As someone who aspires to be a pediatric oncologist, it was so motivating to hear the journeys of these physicians and experts. It was especially inspiring to know that some of them have been witness to and participants in the immense strides that have been made in pediatric oncology (such as the increased survival rate in ALL), and humbling to hear that they still felt that they needed to do so much more.”
-Meghna Dua, Pediatrics Resident, Year 2, Western University
Knowledge Translation through Poster Presentations
“The posters were also an enjoyable part of the Symposium. It was fantastic being able to engage with students and supervisors through visual representations of their work. I was able to ask critical questions that deepened my understanding of their work but also helped to inform my own research questions and methodology. I hope to present a poster at next year’s Symposium and so I also took note of differences in layout and design of the posters.”
-Ashna Khanna, MSc Candidate, Clinical Research, Institute for Medical Science, University of Toronto
Carley won an Outstanding Poster Award at POGO’s 2016 Multi-Disciplinary Symposium on Childhood Cancer
“Presenting at POGO was a great learning experience. As an undergraduate student, it was a phenomenal opportunity to practice my presenting skills and present on a project that I am passionate about. I was able to practice speaking in a professional manner with my target audience being informed healthcare professionals. I was able to disseminate knowledge regarding the iPeer2Peer Oncology project that I have been actively involved in and was able to connect some nurses with the principal investigator to potentially enrol current oncology patients at SickKids with a mentor in the iPeer2Peer program. I felt that this opportunity was a great knowledge translation experience and overall a great learning opportunity as an up and coming health professional and researcher.
-Carley Ouellette, Bachelor of Science in Nursing, Year 4, Western University.
I’ll be Home for Christmas by Jamie Irvine
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.
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.
Your baby has cancer
These four words are forever unforgettable. On May 26, 2015, my wife, Christine, and I had taken our 18-month-old daughter, Charlotte, to see a pediatrician at Grand River Hospital near our home. She was not herself—low energy and very pale. This was the third doctor’s visit that week and we were determined not to leave without answers. After a full morning of tests, Charlotte was diagnosed with acute lymphoblastic leukemia (ALL). We were brought to our knees. Shocked and scared, we learned her hemoglobin was at the dangerous level of 33 and we were rushed to Children’s Hospital in London for an emergency blood transfusion and the start of our cancer journey.
The next 16 days were filled with more transfusions, a surgery to implant her port, various procedures and the start of chemotherapy. We were introduced to doctors and nurses whom we’ve now come to think of as family, and we have learned as much as we could about this type of cancer and its treatment. The days were filled with procedures and the nights were mostly sleepless. It was an extremely difficult time but the silver lining was the care and respect we felt from every member of our medical team. As scared as we were, they gave us the strength to get through those days together as a family. We learned Charlotte’s treatment would span nearly two and a half years. It was at that point we decided Christine would leave her career to care for Charlotte full time. In a blink of an eye our lives turned upside down. We were terrified on many levels but we became quickly resigned to the start of this journey.
When it came time to be discharged, we were asked to stay in London to be close to the hospital until Charlotte had completed the induction stage of treatment. Leaving the security of the hospital was scary for us. We would no longer have a nurse on call to help answer questions or problem-solve at any time of the day or night.
On our last day we met Julie Dowler, our nurse case manager. Immediately we took to her kind and compassionate nature. Christine remembers their first email exchange that day. Julie told her, “Now we are family,” and she meant it. To this day, we still feel like we are her only patients. It was her support and reassurance that gave us the confidence to take the next step and leave the hospital that day.
While staying at my in-law’s home those next two weeks, we had a visit from Margaret Warden, our POGO Interlink Nurse. She helped to educate us further on leukemia as well as the role POGO would play in our lives. We learned about the generous POGO financial assistance available for childcare, food and accommodations, as well as information on the POGO Satellite Clinics. My wife and I had so many questions about what we could expect in the coming months and Margaret took her time to answer every one. Having her undivided attention in our home was comforting and we felt even more secure about Charlotte’s care.
We were counting down the minutes to the end of the induction phase. Charlotte had the full effects of the steroid treatment and in just a month our baby girl became almost unrecognizable. She was still only a baby and not able to communicate her needs or feelings. I remember she would clap her hands in frustration to get our attention. It was completely heartbreaking for our family.
At the end of induction, we were given permission to go home to Cambridge. Once home and settled, we started visiting the POGO Satellite Clinic at Grand River Hospital. It was such a relief to be able to get some of Charlotte’s treatments in our community. It meant I could go back to work and we could feel our lives starting to return somewhat to normal. Patti Bambury, our Satellite Nurse Coordinator, and one of Charlotte’s favourite people, takes great care of us. I’ve been impressed with the way the POGO Satellite Clinic communicates with our team at Children’s Hospital. We’ve never felt a disconnect in Charlotte’s care. Another thing we appreciate about Grand River Hospital is its small size. There are rarely more than a few families there for treatment at the same time so it tends to be a relaxed atmosphere. Christine and I have found comfort in connecting with the other parents while our children enjoy the play area. With only three main nurses, whom we’ve come to know very well, it feels very much like a family and this has gone a long way to improving Charlotte’s anxiety at clinic visits.
POGO opens 8th Satellite Clinic to Support Families in Peterborough area
Like all families on this journey, we’ve had our challenges to overcome. Charlotte’s first port developed a blood clot and she had to endure three months of twice daily blood thinner injections. Two other port surgeries and a PICC line were to follow. On top of this, there was a period of time where she would spit out her medication and we would have to practically hold her down to get her to take it. The worry and stress this cancer has caused in our lives has been insurmountable. My wife and I have both gone through our own stages of anxiety and depression at different times.
Trying to remain strong for Charlotte has been one of the hardest things I’ve ever had to do.
Now that we are nearly a year and a half into Charlotte’s treatment, we have learned how resilient and inspiring children are. Even on the bad days, there is always laughter. The life lessons I’ve learned from my two-year-old will carry me through the rest of my life.
Thank you POGO for your support, your financial assistance and for setting up the Satellite Clinics so families like mine can live more normal lives while still getting the care our children need.
Mike Anstead is the proud father of Charlotte.
“Charlotte turned 5 years old in November 2018 and is thriving in Kindergarten! Every medical follow up appointment finds her stronger and stronger and we are at the point where living with cancer is no longer a part of our daily lives. Life is wonderful, once again!”
– Mom Christine Sarlius, December 2018
Related Resources
Read The Childhood Cancer Care Plan to see how POGO is planning long-term to care for children like Charlotte.
Review The POGO Surveillance Report for the most recent 5-year data on trends in childhood cancer in Ontario.
Check out the presentations from Leukemia: Successes, Advances, Challenges, the theme of POGO’s 2016 Annual Multi-Disciplinary Symposium on Childhood Cancer.