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.
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.
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.
Pediatric Oncology Group of Ontario is delighted to announce the appointment of Dr. David Hodgson as Medical Director of POGO and next incumbent of the POGO Chair in Childhood Cancer Control at the University of Toronto.
Dr. Hodgson’s stellar accomplishments, expertise and experience in the care of children with malignant disease and pediatric cancer control will strengthen POGO’s many efforts to champion childhood cancer control and POGO’s mandate to advance pediatric cancer care and control in Ontario and internationally. Dr. Hodgson assumes his new roles November 1, 2016.
Dr. Hodgson is an internationally recognized pediatric radiation oncologist who has made significant clinical and research contributions through his role at SickKids and his work at Princess Margaret Cancer Centre where he is the Site Group Lead for Pediatrics in the Department of Radiation Oncology and the Director of POGO’s Adult Pediatric AfterCare Clinic. He is a Professor in the Departments of Radiation Oncology, and Health Policy Management and Evaluation at the University of Toronto. He serves as Vice-chair of the Children’s Oncology Group (COG) Hodgkin Lymphoma Steering Committee and as a member of the Childhood Cancer Survivorship (CCSS) External Advisory Board. He has a stellar and long-standing track record in health services research and is cross-appointed to the Institute for Clinical Evaluative Sciences (ICES), having previously served as Associate Director of Clinical Epidemiology and Health Care Research at the Institute of Health Policy, Management and Evaluation (HPME). Dr. Hodgson comes to the POGO leadership position with a major clinical interest in lymphoma, in particular Hodgkin lymphoma, and in the late effects of cancer and the treatment of pediatric cancer survivors.
POGO created the linked position of POGO Chair in Childhood Cancer Control and Medical Director in 2000 so that Ontario would always have dedicated, seasoned, visionary leadership to ensure a well-integrated, evidence-based cancer delivery system for children with malignant disease. The organization works collaboratively with all stakeholders to implement this vision, generating successive long-range Provincial Pediatric Oncology Plans (PPOPs) that have, over many years, greatly enhanced Ontario’s childhood cancer care system.
Dr. Corin Greenberg, POGO’s Chief Executive Officer, summarizes the mandate of the POGO Chair/Medical Director as follows: “The POGO Chair and Medical Director must lead with extraordinary wisdom and charisma to achieve informed and whole-hearted consensus among providers, hospitals and other key stakeholders. The incumbent brings to POGO tables not only an academic outlook, clinical acumen and a unique grasp of research, education and health care delivery savvy, but also the rare ability to ignite a passion to work on behalf of the population and to inspire collaboration. Dr. Hodgson will hold the central role in POGO’s medical directorate—responsible for maintaining the keen interest and participation of the professional pediatric oncology community in endeavours that ensure a continuing state-of-the-art system.”
Dr. Trevor Young, Dean of Medicine, University of Toronto and Vice Provost, Relations with Health Care Institutions, adds, “Dr. David Hodgson is a skilled researcher and physician. Thanks to his extensive experience and determined leadership, he will help POGO advance childhood cancer care through strong collaborations in research and education. This work will benefit the almost 4,000 families in Ontario who have a child receiving cancer treatment or follow-up care. On behalf of the University of Toronto, I congratulate Dr. Hodgson on his new role and I am pleased with his continued association with the Faculty of Medicine.”
As POGO’s Medical Officer, Dr. Gibson provides oversight for POGO’s seven Satellite Clinics including clinical practice and professional development training. He co-chaired the most recent update to POGO’s Satellite Manual which provides guidelines on the management of care at the POGO Satellites, and is overseeing its migration to a web-based platform (from PDF). Dr. Gibson is a member of the executive committee of the Provincial Pediatric Oncology Plan (PPOP), POGO’s long-range plan for childhood cancer care in Ontario (2017-2022). He is also a pediatric oncologist, Children’s Hospital, London Health Sciences Centre, and Assistant Professor, Western University.
Q. What does Childhood Cancer Awareness Month (CCAM) mean for you?
Dr. Gibson: September is a time to celebrate collaboration. It’s a time to acknowledge the team efforts that lead to the remarkable outcomes in children’s cancer. It’s the families, the doctors, the nurses, the child life specialists, information coordinators, volunteers, tertiary hospitals and satellite centres. The saying is that it takes a village to raise a child. Well, it takes a province to care for families impacted by childhood cancer.
Q. What led you to pediatric oncology?
Dr. Gibson: As an undergraduate student, I worked as a counsellor at a variety of summer camps for kids with special needs and interacted with pediatric oncology patients and the dedicated professionals caring for them. It was here that my interest in oncology was sparked. I spent two summers in Alberta where I had the pleasure of working with Kids Cancer Camps of Alberta. Once in medical school, I was fortunate enough to be granted a studentship to spend the summer working with the pediatric oncology team at the Children’s Hospital of Eastern Ontario (CHEO). My experience there cemented my goal to become part of this world.
Q. What aspects of your work bring you the greatest joy, challenge or sadness?
Dr. Gibson: When I tell people I work in childhood cancer, their first response tends to be, ‘It must be so sad.’ I always explain that while the bad days can be awful, the vast majority of days are filled with laughter, levity and team work. Day to day we see our patients enjoying the moment, playing with their families, nurses, child life specialists, therapeutic clowns and volunteers. The biggest challenge still lies in the fact that we don’t cure every patient. Our team is profoundly impacted by challenges such as relapses and patients we can’t cure. It’s important for us to lean on each other in those hard times.
Q. When and why did you become involved with POGO?
Dr. Gibson: I first became involved with POGO as a trainee at SickKids. I participated in the annual POGO symposiums and enjoyed being part of the collective provincial community. I also had the chance to be a presenter during the Satellite Education Days and learn more about the communities served. Since starting in London in 2010, I have appreciated the important job POGO plays in ensuring excellence and equity in kids’ cancer care throughout the province.
Q. What mark do you want to make as POGO Medical Officer and as an oncologist?
Dr. Gibson: POGO’s successes over the past 30 years have been built on the backs of dedicated volunteers and leaders. As Medical Officer, I wish to make my mark by not only continuing the programs, relationships and advocacy of the past, but also to play a role in ushering in new therapies and technologies to improve childhood cancer outcomes for all patients in Ontario.
Q. If you could say one thing to the families and children in your career, what would that be?
Dr. Gibson: I would say, “Thank you!” It’s an incredible privilege to be ‘let in’ to their family dynamic at a time most would say is their worst. Not only do families allow us to work with them and care for their child, but so many also participate in research and clinical trials knowing that the knowledge we gain may never impact their child, but may improve the care and outcomes of countless children in the future.
Q. What would be your call to action to Ontarians for CCAM?
Dr. Gibson: Ontarians must make childhood cancer research a priority. While more children survive childhood cancer now than ever before, too many young lives are still lost every year. We must ensure Ontario children have access to clinical trials that will aim to improve outcomes and minimize long-term complications.
Dr. Gibson graduated medical school from Queen’s University, Kingston, Ontario, in 2004 and started training in pediatrics at BC Children’s Hospital. He also provided locum coverage at the Janeway Hospital in St. John’s Newfoundland, and has practiced pediatric hematology and oncology exclusively since starting his subspecialty training at Sick Kids in 2007.
Since 2012, he has served as a Physician Lead for the creation and implementation of Computerized Provider Order Entry (CPOE) in Southwestern Ontario, and is Physician Lead for the Powerchart Oncology program in London, moving all chemotherapy and documentation to a standardized electronic format.
Dr. Gibson is an avid sports and music fan and when he’s off duty attends Blue Jays’ and Toronto Leafs’ games and live music events and festivals.
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
Dr. Jason Pole is 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.