
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.
As POGO’s Associate Medical Director, Dr. Gibson provides oversight for POGO’s seven Satellite Clinics including clinical practice and professional development training. He also chairs POGO’s Technology and Therapeutic Advisory Committee (TAC) that works to ensure timely and equitable access to state-of-the-art cancer treatment to all children in Ontario. Dr. Gibson was a member of the executive committee of the Provincial Pediatric Oncology Plan (PPOP), POGO’s long-range plan for childhood cancer care in Ontario. He is also a pediatric oncologist, and recently joined the team at McMaster Children’s Hospital in Hamilton. He is also an Associate Professor of Pediatrics at McMaster 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, pharmacists, rehabilitation professionals, 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. I was fortunate to train in pediatric oncology at SickKids and then spend 10 amazing years working as part of the team at Children’s Hospital in London.
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. When I joined the team in London in 2010, I came to appreciate the important job POGO plays in ensuring excellence and equity in kids’ cancer care throughout the province. POGO not only serves as the official advisor to the Ministry of Health, but also an important facilitator of collaboration and cooperation between professionals caring for children with cancer throughout Ontario.
Q. What mark do you want to make as POGO’s Associate Medical Director 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 the Associate Medical Director, 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 helping to usher 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. We must also ensure that we take our best efforts to care for those who survive but are left with immense health challenges and also those who will not be cured and deserve the same world- class care at the end of life.
Dr. Gibson graduated medical school from Queen’s University, Kingston, Ontario, in 2004 and started training in pediatrics at BC Children’s Hospital. He has practiced pediatric hematology and oncology exclusively since starting his subspecialty training at Sick Kids in 2007.
Dr. Gibson served as Physician Lead for the creation and implementation of a variety of computerized provider order entry efforts in Southwestern Ontario, both within and beyond oncology. He has participated in a variety of research endeavours aimed at improving symptoms and quality of life in children and adolescents undergoing cancer therapy.
Dr. Gibson is an avid sports and music fan and when he’s off duty attends Blue Jays’ and Toronto Leafs’ games, and supports independent musicians 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
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.
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
At four, I was diagnosed with stage 4 rhabdomyosarcoma, in my case a tumour the size of a baseball in the lower abdominal area near my bladder. At 20, I have lived almost my entire lifetime in cancer care. And alongside my parents, POGO, through its many programs and services, has been with me every step of the way. POGO teams have supported me through treatment, which included eight rounds of chemotherapy and a series of surgeries at the age of four. And now, 16 years later, as I manage the late effects that have developed as a result of my treatment, POGO AfterCare Clinics continue to support me.
Most people know that cancer treatment can be fairly aggressive, but what many don’t realize is that it can have serious side effects many years later. I continue to be monitored by oncology for second cancers. I need to see a cardiologist every six months because the toxic mix of drugs I was given has the potential to seriously lower my Ejection Fraction Index, which is the fraction of blood pumped out with every heartbeat. And I visit my internist annually because the surgeries that removed my tumour, also left a lot of scar tissue.
Until a few years ago, all of my follow-up care took place at SickKids where I was diagnosed and treated. When I turned 18, I graduated from the all-encompassing children’s hospital system, with its seamless management and coordination between departments, to the adult system (in most situations I am by far the youngest person in the waiting room!). While I have three new doctors spread across the city, luckily for me, and every childhood cancer survivor in Ontario, all of my follow-up care is still coordinated through a POGO AfterCare Clinic. So when my cardiologist wanted to change my medication, POGO teams were able to determine that it wouldn’t do any damage based on the treatment I had as a child. And when my internist wanted to do an exploratory procedure, POGO teams again intervened noting it could do more damage than good with the scar tissue that was built up over many surgeries.
As you can see from my personal story, childhood cancer requires a lifetime of follow-up care. I know POGO will be there for me over the next 20 years, 20 more after that and counting. Without the seamless care of POGO’s AfterCare Clinics, and survivor care programs, many young cancer survivors would fall through the cracks.