Childhood Cancer is a Lifelong Journey
Appearing in Metroland publications, September 17, 2024
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. And while surviving cancer is certainly the goal, the impacts of childhood cancer can last a lifetime.
Richard Lautens Toronto Star file photo
By Lauren Ettin and Dr. David Hodgson
Lauren Ettin is the chief executive officer of the Pediatric Oncology Group of Ontario. Dr. David Hodgson is the medical director and chair in childhood cancer control for the Pediatric Oncology Group of Ontario, a radiation oncologist and clinician scientist at the Princess Margaret Cancer Centre, and associate staff at The Hospital for Sick Children.
Life for the Pugliese family changed forever when six-year-old Giacomo was diagnosed with acute lymphoblastic leukemia. For three years, they made countless trips to McMaster Children’s Hospital, watching their once-energetic little boy endure the challenges of cancer treatment, with interruptions to school and play dates.
Now 17, Giacomo’s treatment is behind him, but he is monitored regularly at the Pediatric Oncology Group of Ontario (POGO) AfterCare Clinic at McMaster Children’s Hospital for secondary cancers and heart issues — risks from his cancer and treatment. The clinic staff also emphasize the importance of a healthy, active lifestyle. His family is reassured that Giacomo will receive this crucial care for the rest of his life.
POGO’s network of clinics across Ontario play a vital role in the ongoing care of childhood cancer survivors, becoming an essential part of their lifelong health journey.
September is Childhood Cancer Awareness Month, a time to spotlight stories like Giacomo’s, which are increasingly common in Ontario.
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. This is thanks to decades of clinical innovation, improvements in diagnostics and treatments, and approaches to addressing some of the related side effects.
While surviving cancer is certainly the goal, it is not where the journey ends. The impacts of childhood cancer can last a lifetime.
Childhood cancers are distinct from adult cancers in significant ways. For one thing, these cancers don’t result from lifestyle or diet. They come suddenly — and some are more likely to strike at a specific age. Typically, childhood cancers require intensive treatments, at major teaching hospitals, with highly specialized protocols. Consequently, care teams may be larger and include parents and caregivers as key decision makers.
A childhood cancer diagnosis impacts the whole family. One parent is often forced to give up work to manage the daily practicalities of their child’s care. Often, extensive travel or temporary relocation is required, uprooting families for months or sometimes years. This disruption reverberates, impacting extended family members, friends, teachers, classmates, work colleagues and communities.
Childhood cancers strike during a critical phase of development, when children and adolescents are marking key physical, mental and social milestones. As a result, two of every three survivors are at increased risk of at least one long-term side effect resulting from their cancer or its treatment, including heart disease, second cancers and cognitive challenges.
To address the unique complexities, ripple effects and long-term impacts of childhood cancer, POGO and its partners have built a system that provides wraparound care and support for children and families at every stage of the journey. Considered among the best in the world, Ontario’s childhood cancer system goes beyond diagnosis and treatment. Families are paired with nurses who help navigate the transition from hospital to home, and they can also access mental health services, financial supports, and programs that help survivors thrive into adulthood.
During Childhood Cancer Awareness Month, it’s important to recognize the tremendous progress made in childhood cancer care. But there is more we can do to ensure kids not only survive, but thrive.
It is vital that children with cancer and their families have access to the best evidence-based treatments and supports, closer to home. This requires strong, ongoing collaboration between care teams, hospitals, nonprofits, government, regulatory bodies, industry and others.
Over the past decade, we have also seen an increasing need for mental health services, a need that is urgently felt among the many who are impacted by a childhood cancer diagnosis. These priorities and others will be key components of Ontario’s Childhood Cancer Care Plan 2024-2029, a road map developed by POGO and its partners to be published later this month.
Ontario must continue strengthening its world-class childhood cancer system so that survivors like Giacomo can count on having the treatments, resources and supports they need today — and for life.
Study Examines Late Effects and Treatment Protocols for Hodgkin Lymphoma in Children
Childhood cancer and its treatment come at a risk of late effects for survivors. In fact, the evidence shows that two of every three childhood cancer survivors are at increased risk of at least one late effect due to their cancer or its treatment, including heart disease, second cancers and cognitive challenges.
A recent study published in JAMA (The Journal of the American Medical Association) looks at the treatment of Hodgkin lymphoma in children and the resulting risk of cardiac disease to survivors.
POGO Medical Director, Dr. David Hodgson, is the lead author of the study titled Late Cardiac Toxic Effects and Treatment Protocols for Hodgkin Lymphoma in Children.
“Cardiac disease as a late effect of treating Hodgkin lymphoma is a serious risk that is well documented,” he says. “One of the challenges of improving treatment is that we don’t want to wait for over 20 years to observe the late effects of treatments we’re currently giving today. The goal of this study was to estimate the risk of late effects of current treatment to better understand how to advise current patients and families, and also explore what changes to treatment would have the greatest benefit to reduce these risks.”
Understanding the extent to which treatment can be modified for improved health outcomes is critical for several reasons.
- Reducing treatment intensity is a trade-off against the risk of relapse.
- Understanding which components of treatment can be adjusted, and to what extent, can lead to better decisions about treatment modifications.
- Care for survivors is based on their treatment exposure making the burden of follow-up care an important consideration.
The study evaluated the treatment of 2,563 patients with Hodgkin lymphoma treated in four consecutive Children’s Oncology Group clinical trials between 2002 and 2022. Patients were treated with different doses of radiation therapy and doxorubicin chemotherapy – both of which are known to increase the risk of cardiac late effects. Based on the doses of these treatments, the 30-year cumulative incidence of severe or life-threatening heart disease was estimated to decrease from 10% in the first trial to 6% in the last trial. The findings were favourable, suggesting that evolutions in treating Hodgkin lymphoma will lead to a net reduction in late cardiac disease. Moreover, findings suggest that for adolescent and young adult patients, increasing the use of “cardioprotective” medications during treatment would be one of the best ways to reduce this risk further, without compromising cure rates.
“While there is still work to be done to monitor the long-term gains in reducing cardiac toxic effects, this is encouraging news that bodes well for the quality of life of childhood cancer survivors,” says Dr. Hodgson. “And, as with every study, we need to ensure that the guidelines for follow-up care of survivors, particularly in POGO AfterCare Clinics, are updated to reflect the latest evidence.”
Read the study here.
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A Reservoir of Strength: Navigating My Child’s Cancer Journey
A question I’m often asked is, “How did it all start?”
It starts with our daughter Ellie—our healthy 10-year-old daughter who played on every sports team. To us, she was the picture of vitality.
One day we noticed what we thought was an innocent bump on her left cheek. Our general practitioner (GP) wasn’t concerned, thinking it was just a benign tumour made of fat tissue. We didn’t think too much of it until it started to grow. Ellie didn’t like how it was changing her face, so we made an appointment with a plastic surgeon to have it removed. Like our GP, he also assumed it was a little benign cyst and that it was nothing to worry about.
Two weeks later, we visited our plastic surgeon for Ellie’s routine post-op meeting. I observed the nurse’s energy and knew that something was wrong. It was the way his eyes darted between me and his computer screen that made the air in the room shift. At that exact moment, I felt my world fracture.
The plastic surgeon took me into the hall and told me Ellie’s biopsy was abnormal and needed to be sent away for more tests. Ten days later, we received the devastating news—our little girl had a type of cancer called rhabdomyosarcoma.
Struggling to make sense of our new reality, we met Arvinder, our POGO Interlink Nurse. When she called to book her first home visit with Ellie, I remember confessing to her that I was terrified and didn’t know how to get through this. She quickly replied, “Don’t worry; you’ve got me now, and I’m going to get you through this.”
Arvinder kept her promise. She’s made multiple home visits; connected us to every single resource we can access; met with Ellie’s teachers and explained to them how her treatment has affected her learning, academics and more, and, above all, she held our hands every step of the way.
About two months into Ellie’s treatment, we were at the hospital for a long day of chemo. Our oncologist asked me to step out and meet her in a small room down the hall from where my husband was sitting bedside with Ellie.
She calmly told me that Ellie’s biopsy indicated she may have a genetic mutation that would make her chemo-resistant. If Ellie was positive for this gene, it meant her treatment plan and chances of survival would change drastically. This also meant that our son, Oakley, might carry the same gene, making him vulnerable to a cancer diagnosis as well. Once again, the air in the room changed, and I was thrown even deeper into a place of fear and uncertainty.
Returning to the room where Ellie was receiving chemo, I had to sit across from my husband and text him every word I could remember our oncologist saying. My hands were trembling while I wrote to him, watching his face absorb this news two feet away from me. We were unable to react, hold each other or say anything without Ellie catching on. Instead, we just sat there silently while tears filled our masks.
Something interesting happens when you’re faced with the traumatizing and terrifying possibility that you could lose your child. It turns out we have this hidden reservoir of strength buried deep inside us. All parents have it, I assure you. And when your child’s health or wellbeing is threatened, the doors to this reservoir get ripped off their hinges and you are flooded with a strength and resilience you didn’t know you had.
During the seven agonizing weeks that we waited for Ellie’s genetic test results, we waited to find out if our daughter would survive this or not. We made her comfort our primary focus, trying to find as many moments of joy and peace as we could. We did everything we could to turn our fear and grief into love and beauty for our daughter. And it worked. When Ellie looks back at her treatment, she mostly remembers it as a cozy, warm and family-centered time. She remembers us all cocooned on the couch, sitting by the fire, taking long warm baths (which we did every 45 minutes, day and night, to relieve the pain). We did everything we could to make her feel hugged, when in reality, we were clinging to the edge trying to maintain our grip.
Finally, I got the call confirming Ellie was negative for the genetic mutation, and we were cleared to proceed to our next phase of treatment—precision radiation called proton therapy, which was only available to us in Jacksonville, Florida. This moment will go down as the most glorious release, the greatest exhale a human being can ever make. It changed every breath I’ll ever make again, and it changed my entire life.
When we returned home to Canada after two months in Jacksonville, Ellie continued chemo at the POGO Satellite Clinic at Credit Valley Hospital—a warm and lovely treatment space not too far from our home. Her nurses, Lindsay and José, walked Ellie through every step of the process and gave her control over her treatment. We saw the same faces every week, which helped alleviate Ellie’s fears. And when she would get a fever in the middle of the night, we had our cozy, familial place to go to.
It's been 10 months and Ellie’s scars have healed, her hair has grown back and she is back in school and on all her favourite sports teams. But as I said before, cancer doesn’t have a clear ending. It’s not over when chemo is done or when a child rings the bell. Ellie’s collateral damage is still to be determined. There is the real possibility of complications later in life and we all live with the fear of relapse or secondary cancers when she’s older.
Despite my worries, I find comfort in knowing that POGO is still on this journey with us post-treatment. Ellie will be monitored regularly for the rest of her life at a POGO AfterCare Clinic. If any late effects are detected, they will be caught early and treated, and the information about her childhood diagnosis and its treatment will continue to be available to us and used as a guide.
I want to make note of a beautiful thing that happens during a child’s treatment. You’ll notice when a parent is talking about their child’s cancer, everything is framed as “we.” “We” have chemo today, “we” have a port flush, “we” have bloodwork, “we’re” being admitted. And families speak this way because our child is an extension of us—if they’re going through something, you better believe we’re going through it right beside them, every step of the way.
I cannot speak for other families, but for ours, the “we” extended beyond our family unit. Arvinder, our POGO Interlink Nurse became part of our “we.” Lindsay and José at the POGO Satellite Clinic became part of our "we." Not merely as part of a service or an access point, but as part of our team and our family, who we simply could not have done this without.
To us, POGO is and forever will be part of our “we.”
Adapted from Samantha Taylor's speech at the 2024 POGO PJ Party
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A New Normal: My Post-cancer Reality
Adapted from Jacob's Speech at the 2023 POGO PJ Party
Before cancer, I was a very active high school student: I played the guitar, saxophone, piano and bass, and I was involved with the Burlington Teen Tour Band. I also stage-managed my school’s theatre program and worked at Cineplex Theatres part-time.
Everything changed the moment I was diagnosed with osteosarcoma (the same cancer as Terry Fox’s) in March 2019 at the age of 16. Immediately, I started to think about all the things I had planned but would have to miss due to treatments. It was a hard reality to face.
Over the next few months, I went through chemotherapy to shrink the tumour in my pelvis. Thankfully, I was able to take a break from treatment to go to France to perform with the Burlington Teen Tour Band. I was thrilled to spend time with my friends and not feel like the “sick guy.” It was one of the highlights of my cancer journey before what would eventually become the darkest time.
Shortly after coming back to Canada, I had surgery to remove the tumour. I was hopeful that the life I knew before my cancer diagnosis would be something I could get back to within a short period. I wasn’t at all prepared for what was to come post-surgery.
I stayed at the hospital for three more months to undergo additional chemotherapy. My experience was nothing short of a nightmare. I couldn’t sit up or move properly. I had blood clots, infections and blood transfusions. Every day I spent in a hospital room took a toll on my mental health. All I wanted was to be cleared to go home and to continue my treatment as an outpatient, but it got to a point where the end of treatment wasn’t even on my radar anymore.
Finally, after months of treatment, I was discharged from the hospital in August 2019. Though it was difficult for me to navigate my environment without my parents’ assistance, I was still happy to be back in the comfort of my home. It made all the difference for my mental health and gave me the space to adjust to a “new normal.”
With the support of my family, friends and incredible organizations like POGO, I went on to accomplish some amazing goals: I returned to school virtually and earned enough credits to graduate with my class; I went from using a wheelchair to crutches and started physical rehabilitation and; I started my Bachelor of Arts program in Popular Music Studies at the University of Western Ontario, where I joined the school’s marching band. I have dreams of becoming a professional music producer, and I’m excited to see where my learning takes me.
Like many childhood cancer survivors, my disease and its treatment have left a mark that has affected my cognitive function, ability to learn and retain math, and overall mobility. Only time will tell if these complications will ever improve, but I am content with where I am at in my journey.
I am grateful for the many kind and compassionate individuals at POGO who played, and will continue to play, a significant role in my transition from a childhood cancer patient to a survivor. This includes the POGO Transitions Counsellors who have helped me ensure that I’m set up for success in university, and the POGO AfterCare nurses who continue to provide me with post-treatment support at my Clinic.
It is an honour to have been given this opportunity to speak on behalf of the childhood cancer community. Though this is the first time I am sharing my story publicly, I hope that it will transcend the limits of this space and inspire children, youth, fellow survivors, and their families in some way.
By Jacob McKenzie
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Virtual Counselling to Help Childhood Cancer Survivors
A conversation about the mental health of childhood cancer survivors with registered psychotherapist Carly Fleming.
Q: How are the mental health needs of childhood cancer survivors unique?
A: Individuals who experience cancer as a child often carry the pieces of this experience with them into adulthood. This could be in the form of lasting physical pain/impairments or emotional trauma resulting from their treatment. They may also experience worry and anxiety about their future health, grief from losing friends to childhood cancer and guilt that they survived, or changes in family dynamics that came about as a result of their cancer. This is all a heavy load to carry. Often in childhood or the teen years, they aren’t emotionally ready to process the enormity of these things. But once adulthood arrives, the true weight and gravity of childhood experiences can come to light, resulting in mental health challenges. Survivors often feel that there is something wrong with them if they are still struggling years after being “cured.” Each person will experience things differently, but it makes sense that childhood cancer survivors may need to work through the emotional issues they are facing in order to live life to the fullest.
Q: What do you think healthcare teams can do to help their patients’ mental health?
A: The answer to this is simple. Ask good questions. Of course, asking good questions isn’t as easy as it may seem. When we ask good questions, we are open to any answers, not just the ones we predict or want to hear. When we ask good questions, we try to stay away from yes/no responses and leave room for complex, nuanced answers. When we ask good questions, we recognize that there may be uncomfortable silences, or the answers may make us feel uncomfortable, and that’s ok. When we ask good questions, we lead with curiosity.
Q: What has changed about counselling during COVID-19?
A: Before COVID-19, we had the technology to offer virtual counselling but rarely used it. In the past year, the vast majority of mental health services have gone virtual, forcing clinicians and clients to adjust quickly. I think the most significant change has been in our attitudes towards virtual counselling. We used to look at it as a second option, a sub-optimal choice when in-person meetings weren’t possible. This means some clinicians and clients weren’t fully bought into the idea of counselling this way. Now that we have been forced to adapt quickly to this modality, we have seen the good things about in-person counselling happen virtually. Plus, we are able to connect with people who live far away or have difficulty travelling to in-person settings. From the standpoint of counselling, the pandemic has created incredible opportunities to connect in ways that make it far less burdensome for our clients.
Q: Do you prefer virtual counselling? What are the challenges when treating a childhood cancer survivor virtually instead of in person?
A: It can take a little longer to establish a new relationship between counsellor and client online. Without the in-person connection, we sometimes have to work harder and be more patient before the wonderful feeling of connection arrives. This can be problematic when the client feels apprehensive about meeting with a counsellor. Arranging a few shorter meetings to get through the initial “meet and greet” or intake questions can help. Making sure we take time to make a connection in non-clinical terms is also really important. Just some simple chatting about their life and sharing of some common ground can make a huge difference. Another challenge is ensuring the client’s full attention to the online meeting. When we used to meet in person, clients would come into our office and have very few other demands/distractions. Now that clients connect with us from their homes/offices/cars, there are many other demands on their attention. Vulnerability is compromised when they aren’t in a private, quiet space.
Q: What do you mean by vulnerability?
A: To truly explore what is meaningful to an individual, we need to get them to take down their defences. Many survivors put on a brave face, but that is not where the healing and transformation occur. Vulnerability is essential to good mental health care.
Q: At POGO AfterCare Education Day, what do you hope to convey in your session?
A: I hope to convey optimism about how the move to virtual counselling during the pandemic is an opportunity to create more accessible mental health care for childhood cancer survivors. I want to share some of the experiences and insights that I have gathered after the past year of providing virtual psychotherapy. Lastly, I plan to highlight some specific safety measures to ensure we are ready to help our clients should we identify in a virtual appointment that their safety may be at risk.
I am looking forward to learning from the other presenters about their experience in providing care to childhood cancer survivors over this challenging year.
Carly Fleming is a Registered Psychotherapist and founder of everwell Integrated Health Professionals, a virtual counselling group in Hamilton, Ontario, offering a range of services to guide meaning and healing. She has worked as a counsellor in private practice and various healthcare settings for over 15 years, specializing in grief and loss, parenting, coping with illness, and life transitions.
You can hear from Carly first-hand at the 2021 POGO AfterCare Education Day, where she will be presenting with Pediatric Psychologist, Sara Ahola-Kohut about Optimizing Online Mental Health Counselling for Childhood Cancer Survivors.
Creative Corner with Josh - eNews
Josh is an incredibly talented guitar player, who also happens to be a survivor. Check out his video!
(If you are using Internet Explorer, video may not load as intended).
If you have an interest in learning how to play guitar (or just want to hear great music), he is your man! To see and hear more of Josh:
YouTube: @Josh Taylor–Brown
Facebook: @Josh Taylor-Brown Music
Instagram: @J.tbrown
If you’re interested in taking guitar lessons, Josh would love to hear from you at jtaylorbrownz28@gmail.com
