Blog
Far From Home When Your Child Has Cancer
By Stephanie Lacasse
The day I took my daughter Isabelle to the hospital, I was expecting to pick up a prescription for her and make my way to daycare to pick up my twins, Nicholas and Maxime, before meeting my eldest, Zacharie, at the bus from school. But when the doctor at our local hospital asked me to take a seat, I knew we were in for a much worse scenario. He told me her red and white blood cells were low—very low. He said it was likely cancer but they didn’t know what kind. He called ahead to the hospital in Sudbury and sent me straight there.
My husband, Joel, met us at the Northeast Cancer Centre and after a few more tests, we were told they were sending Isabelle to Toronto immediately. Only one parent could accompany her on the plane so being the more experienced driver, Joel made the six-hour drive to the city. I made arrangements for my best friend and my mom to pick up and take care of the kids, and we left. I had no idea I would not return home again for another 48 days.
“The first few times Isabelle got a lumbar puncture, I couldn’t breathe. Parents are not allowed in the room during the procedure and I just stood on the other side of the door paralyzed.”
– Stephanie Lacasse
Isabelle was diagnosed with acute lymphoblastic leukemia (ALL). The doctor told us the prognosis for kids with ALL is typically very good and the survival rate is high. We were so relieved; we decided to keep our sights on the end and buckle down for a fight. But the next few weeks were hideous and challenged us all in many ways. The intravenous needle in Isabelle’s hand kept coming out in her sleep and blood would spurt everywhere. She developed high blood pressure, severe pains in her belly due to constipation from the drugs and an infection where the port was implanted to deliver her meds. Isabelle also contracted C-difficile, a bacterial infection causing diarrhea, which completely wiped her out to the point she had no muscle mass in her legs and she had to learn to walk again. But the scariest thing for us was her non-responsive episodes which lasted for several minutes each time. Tests revealed that Isabelle had developed a blood clot in her brain from the original chemotherapy and she would require blood thinners delivered by needle twice a day for over a year. Joel took a month off work, but when we could not handle that financially anymore, he returned to his job and I stayed in Toronto to care for Isabelle by myself.
I haven’t been able to go back to work. Joel works out of town, one week on and one week off, so when he is not with us I am the one navigating this world of blood tests and chemotherapy while coordinating care for the rest of my family.
Luckily, most of Isabelle’s care takes place an hour away at the POGO Satellite Clinic at the Northeast Cancer Centre in Sudbury. This saves me the gruelling six-hour drive with a nauseous child in the back seat and means more time at home with my kids and my husband. The nurses at the clinic go above and beyond when it comes to connecting us to resources, especially when I do have to make the trip back to Toronto for aspects of Isabelle’s treatment that cannot be handled in Sudbury. Our family is incredibly grateful for the support that we have received.
Read more to learn how POGO Interlink Nurses support children with cancer and their families.
Having a child with cancer takes its toll on the other kids, the household, the marriage, but we seem to be getting back to normal lately—or at least a new normal. My beautiful little girl is four years old now. She doesn’t need to sit on my lap anymore when she gets her blood work done and loves taking the bus to school by herself. She is one tough little cookie.
Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
By Barb Williams
It is surprising to many to hear that childhood cancer does not end with “being cured.” Childhood cancer and brain tumour survivors can develop learning difficulties resulting from their disease or treatment. These late effects may be further complicated by long-term physical effects, as well as emotional problems and mental health issues. It is easy to see how and why these young survivors face struggles in the worlds of work and school. Despite their physical and cognitive challenges, childhood cancer survivors have high aspirations for themselves and are motivated to achieve their goals. The POGO Transitions Program was developed as the result of parents’, patients’ and doctors’ concerns about young students, many with invisible disabilities, falling through the cracks at a critical time in their academic lives—graduating high school and moving on to college, university or work.
The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor
I want to point out that not all survivors struggle to meet their academic and professional ambitions. For some, the obstacles they experienced due to their childhood cancer have helped build their resilience, discipline and confidence. But there are a significant number of childhood cancer survivors who are grappling with emotional and mental health issues, including anxiety, depression, low self-esteem, low confidence and self-worth—sometimes accompanied by social isolation and bullying. And these issues, as much as their learning challenges, can severely impact their ability to achieve their goals and become independent young adults.
As one of five POGO Counsellors across the province, it is my job to strengthen my clients’ confidence through realistic goal planning and facilitate their transition to post-secondary school and work. While there is a practical element to this in terms of job preparation and academic pathway information and navigation, there is often an emotional component. This is to say, I provide early guidance and career planning, help clients access the appropriate accommodations for school and work, and work with them to ensure their dreams and goals align with their strengths and skills. However, my colleagues and I also help our survivor clients address self-confidence and anxiety issues by listening without judgment and showing we care, and when further psychosocial intervention is required, we make the appropriate referrals. This one-on-one emotional support and encouragement POGO Counsellors provide is highly valued by survivors, as well as their family members who support them.
When I describe my job as working with childhood cancer survivors who experience challenges with school or work as a result of their disease or treatment, the most common reaction I get is how it must be such difficult or depressing work. On the contrary; I get to meet young people on their journey of surviving childhood cancer and planning for their futures, even if there are obstacles to overcome. We envision their next steps and talk about their dreams. I get the opportunity to engage with them in something positive, and if they are not feeling positive, there is a chance, with the rest of the healthcare team, to intervene and set them up for success. These are the things that make our Program so unique, so important and so uplifting. The most exciting thing for me as a POGO Counsellor is to watch my survivor clients’ self-confidence and ability to advocate for themselves increase, witness them rise to challenges they didn’t think themselves capable of, and see them achieve their goals and aspirations.
Barb Williams is the Provincial Coordinator and POGO Counsellor in the Hamilton area for The POGO School and Work Transitions Program (POGO Transitions Program). The Program facilitates a smoother transition for childhood cancer and brain tumour survivors moving on from high school to appropriate post-secondary and work opportunities. This post is based on Barb’s professional experience and the 2020 report The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of The POGO School and Work Transitions Program.
The Value in Virtual Racing
By: Cynthia O’Halloran
Once upon a time, when virtual races were first making their debuts on the running scene, I scoffed at them. “Why would anyone want to do a virtual race?” I wondered. “What’s the point? You’re still running on your own and I do that all the time. I can push myself to run a fast 5K any time I want without wasting my money.” At that point in time, to me, the whole premise behind virtual races was a money grab.
Fast forward to the spring of 2020 when race after race was cancelled. The goals that we had been targeting simply vanished into thin air. My post-injury hashtag #trainingtotrain became #trainingfornothing. While my dedication to my sport was there, my enthusiasm to train without a foreseeable goal race was not. It wasn’t long before I found myself thinking about virtual racing.
“Do I really need to spend money on something like this? I don’t need a t-shirt or another medal.” But the more I thought about virtual racing, the more I realized that my participation was not really about me. It was about supporting the running community.
“In the same way that we support small businesses,” I told my husband, “we need to support the race directors. Racing is their business. And they have been good to me. There are so many races that have helped me become the runner that I am today. Their race directors are struggling right now so supporting them by registering for a virtual race is the right thing to do.”
The more I spoke with Dave about this, the more I understood virtual races. “And they help charities too. Hundreds of charities depend on fundraising from road races. Right now, that isn’t happening and charities are being hit financially. So a virtual race helps the race organization and a charity. It’s a win for both.”
After making a decision that I never would have a few years ago, I registered for the Toronto Women’s Run Series Virtual 10K, one of three races in a series directed by Cory Freedman. This a major fundraiser for POGO (Pediatric Oncology Group of Ontario); as a parent of a brain cancer survivor, I know how important supporting this charity is. This race also holds a special spot for me as it is one of the first women’s only events designed to encourage women as runners and walkers. For me personally, the races helped build my confidence as a female athlete and motivated me to starting chasing my dreams. So, in my eyes, the Toronto Women’s Run Series 10K was one event that I just had to support.
I registered and ran, not raced, on the following Saturday. I ran longer than I needed to (11.25K) and my average pace was slower than my 10K race pace, but I didn’t care. I felt good. I was supporting the running community and helping a charity. But what I didn’t expect when I registered was the happiness that I felt from finishing, from being reconnected to the racing scene – even if it is a virtual one.
As runners, we are use to giving back and now is not the time to stop. Race organizations are trying to stay on their feet and, quite frankly, we need them to survive if we want to return to racing in a post-pandemic world. The charities they support also need our help. So if you are able, find a virtual race and register for it. Pick one that means something special to you or supports a charity you value. Perhaps you’d rather race virtually in some faraway place where you have always dreamed of visiting. Or consider making a donation to a local charity that your favourite race supports. Now, more than ever, is the time for the running community to come together.
This blog was originally published on www.cynsspace.com where you can find more stories from Cynthia about running, cycling and self care.
POGO Childhood Cancer Data Informs New Cancer Statistics Reports
This year, POGO data will inform three Canadian cancer statistics reports—an important milestone in POGO’s efforts to monitor and publicly report on the impact of childhood cancer in Ontario, in alignment with one of the five goals of our Childhood Cancer Care Plan 2018-2023.
Later in September, for Childhood Cancer Awareness Month, POGO will release Childhood Cancer in Ontario: The 2020 POGO Surveillance Report, an update of our comprehensive and detailed provincial childhood cancer surveillance statistics. This report continues to confirm that Ontario’s childhood cancer survival rates are among the highest in the world and that all types of childhood cancer are rare (less than 6 per 100,000 children per year). It also provides information about the number of Ontarians each year who were diagnosed with cancer as children (prevalence). In addition to updating the data and trends, new details about cancer subtypes and age groups have been added.
August 2020 marked the first-ever inclusion of childhood cancer statistics, generated based on analyses by POGO from data in POGONIS (POGO’s childhood cancer database), in the Ontario Cancer Statistics report, which was released by Ontario Health (Cancer Care Ontario). This report provides a comprehensive summary of the burden of cancer in Ontario residents of all ages and helps to answer vital questions such as: What types of cancer occur in children in Ontario as compared to adults? How does childhood cancer, mortality and survival compare to adult cancers?
In addition, POGO continues to collaborate with the Public Health Agency of Canada by providing timely and high-quality childhood cancer data from POGONIS to populate the Canadian childhood cancer surveillance database, Cancer in Young People in Canada (CYP-C). This ensures that the Ontario childhood cancer population data is included in national reports, such as the CYP-C Data Tool, to yield key information, such as how childhood cancer incidence in Ontario compares with other provinces/territories and Canada overall.
POGO ensures that the latest, high-quality childhood cancer data from POGONIS is available to generate childhood cancer statistics for use by healthcare professionals, researchers, system and program planners, and policy- and decision-makers to help drive an effective childhood cancer care system. By working in partnership with organizations like Ontario Health (Cancer Care Ontario) and the Public Health Agency of Canada, as well as with the hospitals that treat children with cancer in Ontario, to monitor and report on the burden of childhood cancer in the province, POGO aims to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond.
We hope you find these reports to be helpful references in your efforts to champion childhood cancer care!
COVID-19 Reveals Benefits of Home Visits for Families of Children with Cancer
A Reflection from POGO Interlink Nurses
The COVID-19 pandemic transformed our work in such a way that we see, clearer than ever before, how essential traditional home visits are in supporting families through their child’s cancer diagnosis. Currently, virtual visits are the norm and are taking place by phone or on video conferencing platforms like Zoom and the Ontario Telehealth Network. POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.
But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.
Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.
Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.
Home visits, where we’re all face-to-face, also makes it easier and more efficient to complete and collect documents and application forms. This is especially critical when families have an urgent need to access financial support.
Since COVID-19, we have embraced and adjusted well to virtual visits to bring nursing and psychosocial care to our families, but there are challenges. Seeing a child and assessing their general physical well-being is not easy. We can teach virtually, but our use of teaching aids does not work well from a distance. For example, we can show our teaching dolls, but playing with them in a way that allows mom or dad to become familiar with central line devices is tricky. And though many young parents are embracing virtual care, it is more difficult for those for whom English is a second language or when families have less access to technology.
We anticipate and look forward to home visits because we know they have many benefits for children and youth with cancer and their families.
*This fall, the return to school for children with cancer will require extra support as families navigate the complexity of COVID-19. POGO Interlink Nurses will advocate for specific accommodations for patients unable to return to school, for families who are choosing to opt-out of in-person learning and for those reintegrating into the classroom setting.