How Slushies and Red Lights Provide Supportive Care for Childhood Cancer Patients
About a decade ago, I sat in a hospital in Leeds, Yorkshire, discussing with the parents of one of my young patients their high-dose chemotherapy treatment, including the risks of severe infection, liver and lung problems. “And,” I added as an aside, “there’s a chance of mucositis, which is a sore mouth, like a mouth ulcer.”
Three weeks later, and the child could hardly open their mouth—with lips cracked and bleeding, spitting out small pieces of the lining of their mouth, unable to eat or even swallow their own saliva. The lack of attention I had paid to mucositis up to that point struck me hard. And back then, there was very little we could do to prevent or treat it.
POGO Guidelines Offer New Approaches to Mucositis Care
Fast forward to mid-2020s when the POGO Clinical Practice Guideline update to Prevention of oral and oralpharyngeal mucositis in pediatric cancer and hematopoietic stem cell transplant patients summarized the most effective—and importantly the ineffective—therapies and approaches to prevent and treat mucositis in children and young people.
The POGO guideline gave us some new approaches to try, and, as it was an extremely well-produced and high-quality international guideline, the leverage to kick some of these approaches into action.
Why is it important that the guideline marks out ineffective treatments?
1) There's the hassle of taking medicines when they don't do anything.
2) There's the side effects, including stinging and bad tastes.
3) There's the unnecessary costs to the health service.
Slushies Bring New Meaning to Cold Comfort
One approach suggested in the guideline was "cryotherapy." You might have heard about cryotherapy for freezing off veruccas (warts) on your feet, or maybe with respect to Walt Disney freezing his body after death, but the phrase just means "treating with cold." In the case of mucositis prevention, this means the patient holding ice chips in their mouth. It's meant to reduce the amount of blood flowing to the delicate layers just inside the mouth, and so reduce the amount of chemo passing there to cause damage. In the UK, we struggled with the technical troubles of how to exactly procure, store and regulate popsicles within our hospital system, but this has been spectacularly and tastily overcome at McMaster Children’s Hospital in Hamilton, Ontario, with an in-unit slushie machine. Choosing which slushy you can have with chemo seems much more appealing than holding an ice cube in your mouth until it melts!
Shining a Red Light on Healing
The other main approach in the guideline was photobiomodulation. This is the use of a special wavelength of red (or infra-red) light to encourage the cells of the mouth lining to heal faster. Working with a hugely enthusiastic pair of dentists, and in collaboration with our local hospital charity, we acquired an LED-based photobiomodulation system. We put together detailed information on how to use it, how to clean it, and (after a beautiful bit of co-design and qualitative research from Dr. Claudia Heggie), a film made with young patients to explain it.
Now, despite my slight incredulity that shining what looks like a fancy red torch on someone would make them feel better, we use it frequently. We’ve massively reduced the severity of mucositis in our transplant unit and reduced the numbers of patients who've needed TPN (all your “food” fed through your central line). We’ve had patients travel from long distances to get some red light magic to feel better. We’ve seen requests from around the country asking how other units in the UK can get it going. Which makes us sound great, but it should be noted that this only got going because the POGO guidelines were there. Not wishy washy “expert” statements from the manufacturers of these devices, but guidelines with solidity and seriously interrogated evidence. This quality of document helps us persuade the administrative teams who need to control the finances of our hospitals that the intervention is truly likely to help our patients, and maybe even save money.
POGO’s Impact Immeasurable
These guidelines, the creation of a team based in Ontario, has spread good things much, much further. POGO, please listen to me, as a “come from away”: your work has power. POGO should be extremely proud of the guidelines they develop, nurture, help to create and support the uptake of. The impact they have around the world is immeasurable.
By Bob Phillips, BMBCh, PhD
Professor of Pediatric Oncology and Director, Candlelighters Supportive Care Centre,
University of York/Hull-York Medical School, UK
Dr. Bob Phillips is a Senior Academic at the Centre for Research and Dissemination and Hull York Medical School and an Honorary Consultant in Pediatric/ Teenage-Young Adult Oncology at Leeds Children's Hospital. Bob is a respected global leader in supportive care management. He spoke at the 2023 POGO Symposium on Childhood Cancer.
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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POGO Welcomes New CDO, Shannon Caskey
POGO is pleased to welcome Shannon Caskey as our new Chief Development Officer, with oversight for POGO’s fundraising and communications teams, starting April 1, 2024. Shannon succeeds Lynn Wilson who retired from POGO in March and whose outstanding leadership helped raise millions of dollars that have impacted and benefited childhood cancer care in Ontario.
Shannon is a Certified Fundraising Executive (CFRE) who was recently awarded as Best Individual Fundraising Professional by Charity Village. She holds a graduate certificate in Corporate Communications, an Honours BA in English Language & Literature and has work experience at SickKids Foundation, Right to Play Canada and True Patriot Love Foundation.
For the past six years Shannon has served as the inaugural Director of Development at The Darling Home for Kids, where she established an excellent team and developed their fundraising strategy, resulting in significant growth in donors and doubling annual revenue. Shannon was the overall lead on the strategy and execution of The Embrace Campaign, the organization’s largest capital campaign in its history.
Having worked predominantly in organizations supporting children, Shannon is excited to bring her development expertise to her new role at POGO: “To step into the role of POGO’s Chief Development Officer is a true honour. I have long admired the accomplishments of the organization in their mission to achieve the best childhood cancer care system for everyone affected. I look forward to working with the amazing POGO team, donors, volunteers and supporters to continue making an impact to help ensure access to the best care our province can provide.”
Please join us in extending a warm welcome to Shannon.
POGO Welcomes New CEO, Lauren Ettin
POGO is pleased to announce that Lauren Ettin will be joining POGO as our new Chief Executive Officer, beginning April 29, 2024. After an extensive search, Lauren emerged as the ideal candidate to lead our organization into the future. She succeeds Jill Ross who has served admirably in the role since 2018, leading the organization through a critical time and delivering on our commitments to families and children.
"Lauren’s diverse background and wealth of experience across the healthcare system and in pediatrics uniquely position her to lead POGO toward continued excellence and innovation," says James Scognack, POGO Board Chair. "She has a vision for the organization that we share, strong connections with the pediatric community, and a passion for supporting children, youth, and their families, which, among other attributes, make her ideally suited to the role."
Lauren’s career has spanned the public, private, and nonprofit sectors. She has proven herself to be a strategic and entrepreneurial leader, with her most recent role as the founding Executive Director of Kids Health Alliance. In this role, Lauren forged relationships and formal collaborations with and between children’s and community hospitals, associations, and government. In addition, she was instrumental in the work of the Children’s Health Coalition, bringing together a collective voice for the pediatric sector, which resulted in a historic investment of $330M for programs and services across Ontario.
Prior to her time with Kids Health Alliance, Lauren served as the Director of Policy and Member Relations with the Council of Academic Hospitals of Ontario, worked in consulting and spent time in management roles in the Ministry of Health and Cabinet Office.
Lauren shares her excitement about joining the POGO team: “This is a dream opportunity to bring my experience in pediatrics to an organization of such high esteem. I am honoured to be the successful candidate and I look forward to working with the incredible childhood cancer community and all those who so generously invest their resources to ensure everyone affected by childhood cancer has access to the best care and support.”
Please join us in extending a warm welcome to Lauren. We are excited about the future and look forward to the positive impact that Lauren will undoubtedly make as she builds on POGO’s 40-year foundation to further the organization’s mission and vision.
Volunteering: Apply for the Experience, Stay for the Benefits
There are so many benefits to volunteering!
Whether it’s delivering meals to seniors or walking shelter dogs, being a peer mentor or being part of a team organizing an event, when you volunteer, you connect with others and you often see that you’re making a positive difference in their lives or in the community. So, it’s no surprise that volunteering can have both physical and mental health benefits. Research has shown that adults with disabilities or chronic health conditions who volunteer often see an improvement in their pain levels. Volunteering can also reduce stress, anxiety and depression.
Volunteer for One Day or More – The Choice is Yours!
Volunteering also provides a great opportunity to test different educational or career paths. Whether you have a job in mind, or are unsure what field interests you, volunteering allows you to look for opportunities that require various levels of commitment. It might be a one-day event, a two-week long project, twice a month for a year, or other…you have the flexibility to decide what to pursue based on your capabilities and time availability.
Add Volunteer Experience to Your Resumé
If you’re also looking for paid employment, there are ways that you can use your volunteer experience to help get a job. As a volunteer, you might be on the organization’s email list where job postings are sent out. You can also develop internal workplace connections to ask about open or upcoming positions, and a recommendation. References are often required when applying for jobs, so having someone that can speak directly to skills you have demonstrated is incredibly valuable. Adding volunteer experience and the skills you have developed from it to your resumé will help with your application to other jobs!
Seek Accommodations as Needed
If you have a disability and/or need accommodations, you can still volunteer! Read the volunteer posting carefully to see what you are expected to do in the role. If you need support with any of the job requirements, you can start a conversation about this when going through the application process.
It can be intimidating to bring up a need for accommodations, but if you feel passionate about a position, do not let that be a barrier. Remember that you are entitled to ask for accommodations and many community agencies that hire volunteers are eager to provide these if possible. You are the expert in this situation, so be prepared to explain what accommodations would be most beneficial to you. Remember, you do not have to disclose a diagnosis or any medical information if you don’t want to.
As you can see, while you’re helping others, there’s a lot you can get in return. So, consider getting out there to volunteer!
Need help with applying to a volunteer position? Contact your POGO School and Work Transitions Counsellor so they can help you prepare for the volunteer experience.
*This article was adapted from the S2S Network presentation “Volunteerism: Empowering Yourself and Others” by childhood cancer survivor Payton Tenebaum. Information about this year’s S2S Network presentations is coming soon!
Q & A with our Newest POGO Counsellor
WHY DO YOU WANT TO BE A POGO TRANSITIONS COUNSELLOR?
I have always been drawn to roles that involve supporting individuals within our community and I have experience with helping people navigate various transitions in life. Joining the POGO team represents a new and exciting opportunity for me. I have not previously worked with cancer survivors, so this is a unique learning experience. We all encounter transitions at some point, and being able to contribute to someone’s journey by providing the help they need is incredibly rewarding to me.
WHAT IS YOUR FAVOURITE PART ABOUT YOUR ROLE?
My favourite aspect of the job so far has been getting to connect with people. I enjoy engaging in conversations and getting to know individuals on a personal level. It’s also really great seeing how committed the whole healthcare team is to assisting individuals who have cancer.
WHAT IS THE HARDEST ONCOLOGY WORD/TERMINOLOGY YOU HAVE HAD TO LEARN?
There’re a few and I’m definitely still learning, but if I had to pick one right now it would be myxopapillary ependymomas, which I have learned is a type of brain tumour.
WHAT HAS BEEN THE BIGGEST SURPRISE WORKING WITH SURVIVORS?
The biggest surprise for me has been the lasting impact that cancer treatments can have on an individual’s body later in life. Before stepping into this role, I hadn’t fully grasped the extent of these long-term effects. Nevertheless, it’s remarkable witnessing the support system that surrounds cancer survivors from the dedicated teams at the POGO AfterCare Clinics.
DOGS OR CATS?
Without a doubt, dogs. Maybe it’s because I’m allergic to cats, or maybe it’s just that dogs have mastered the art of unconditional love and I will take that any day, especially since it comes without the sneezing!
WINTER OR SUMMER?
Most definitely summer! I dream of living somewhere where the weather is warm all year round. I find there is so much more to do in the warm weather!
WHAT IS YOUR FAVOURITE PUMP-UP SONG RIGHT NOW?
Maybe not considered a “pump-up” song, but one song that has been on constant repeat for me that I love to belt out to is “White Horse” by Chris Stapleton.
WHAT IS THE BEST PIECE OF ADVICE YOU'VE EVER RECEIVED?
The advice I received that has stuck with me is to romanticize your life. Essentially, make even the smallest things in your day-to-day life seem amazing and exciting. Every Sunday, I write down the best thing that happened to me on the weekend. Sometimes there are bigger moments we can think of easily, but sometimes it’s nice to think of the small moments, too, like having the time to drink a hot cup of coffee before heading off to work!
Creative Corner with Ramjot
Growth
When I first started creating this sculpture, it was an absolute mess. The structure and stability of the tree were a challenge to figure out but slowly it all started coming together. It was like putting the pieces together in a puzzle. I didn't fully understand why I created a tree until I started sculpting every little curve or indent, gluing on the leaves and adding the finishing touches. The tree symbolized my growth. Just like me, the tree encountered many obstacles when it was being sculpted. It took hours, days, weeks to finish and at some point, I felt like giving up on it. The tree expressed me. It started wonky but the more time and effort I dedicated to it, the stronger it got. Similarly, when I was recovering from my cancer treatment, it was hard to fit in with my peers at school and integrate into my new reality. But as the years went on and I got out of my comfort zone, I grew to be the best version of myself. My piece, Growth, shows the journey of my life and how I've grown into the person I am today.
Check out other Creative Corner works done by Dorian and Xander
Outstanding Leadership from Our Partner Bruce Power
In 2019, Bruce Power made a five-year pledge of $300,000 to POGO initiatives. The financial investment demonstrated their commitment to provide children and youth with cancer, survivors and families with access to ongoing treatment, care and financial support. But it is the activity that ensued that illustrated their true dedication to champion childhood cancer care.
From catalyzing more champions for POGO, to supporting the ongoing professional development of our healthcare professionals, to delighting our young patients and their families with some extra special fun activities, Bruce Power’s outstanding leadership has distinguished them as a true POGO partner—here for kids with cancer. For now. For life.
Watch this animated video for a snapshot of Bruce Power’s support of POGO.
Forty Years of Progress in Childhood Cancer Care Focus of 2023 POGO Symposium
In 2023, rather than homing in on one specific disease group, we took the opportunity to look broadly at POGO’s 40-year history, and the significant changes in childhood cancer care over four decades. With this broad appeal, more than 215 participants joined the POGO Symposium with representation from nursing, pharmacy, physicians, students, government, allied health and community supporters; a testament to the true team effort required to care for our patients.
Dr. Mark Greenberg, POGO co-founder, opened the two-day event by guiding us from POGO’s inception and the many challenges faced, and the incredible successes along the way, to the important work that remains to be done. It was clear that POGO’s early achievements required tremendous persistence, tenacity and optimism by the founders, and led to POGO becoming a Ministry of Health-funded contributor to the childhood cancer care system. Our respective institutions and the children of this province are so fortunate for the work that has gone into creating and building POGO from the ground up and the vast improvements in childhood cancer care that POGO has facilitated.
A Comprehensive Approach to Childhood Cancer Care
One of the loudest themes that reverberated through this year’s event was the recognition that the best possible cancer care system moving forward will take a holistic approach to treating the child and supporting the family.
We heard about inspiring advances in therapeutics and how novel drugs such as blinatumomab, and entirely new classes of drugs, are showing promise to cure previously incurable cancers. Across all sessions, led by national and international experts, we reflected on improvements in outcomes and strategies for the future across many forms of childhood cancer, including acute lymphoblastic leukemia, neuroblastoma, Hodgkin lymphoma and solid tumours. Taking a step further into the future, Drs. Malkin and Shlien described incredible new technologies that bring together advances in molecular genetics and artificial intelligence, holding the promise to better elucidate the biological differences in seemingly similar tumours and more accurately target treatment to specific biological subtypes.
However, we also had the opportunity to acknowledge that cancer-directed therapy is not the totality of childhood cancer care, and that there are critical elements of high-quality treatment whose value is too often under-appreciated. Dr. Bob Phillips took us on an adventure through the world of supportive care and strategies for implementing clinical practice guidelines, POGO’s included. Dr. Kira Bona discussed the often overlooked and vital need to recognize and intervene on health disparities affecting our patients and their families. Food insecurity and material deprivation can have as big an impact on treatment outcome as many of the conventional prognostic factors we use routinely in clinical practice. Dr. Fiona Schulte spoke about the imperative need to provide psychosocial supports and measurable interventions for our patients, and Maria Talotta shared new opportunities for mental health supports for our patients and their families through Ontario’s Youth Wellness Hubs. As adverse social determinants of health become increasingly prevalent in Canadian society, it is more urgent than ever that we develop methods and infrastructure to reduce their impact on children with cancer.
We must also keep at the forefront of our minds that cure is not where our patients’ cancer journey ends. Many patients are left with late effects, and excellent survivorship care is paramount. Dr. Jennia Michaeli and Stacy Whiteside brought light to the importance of establishing fertility preservation for our patient population as standard of care. Finally, we heard through multiple sessions the inherent value in ensuring that our patients have a voice in their own decision making, and how best to enable this.
Childhood Cancer Survivors Thriving in the Medical Field
We had the pleasure of watching several digital stories from childhood cancer survivors who shared pieces of their journey. Each of these incredible individuals also shared how they were inspired by members of their care team to work in health care, in such roles as a nurse, physician, child life specialist, and program assistant. These stories remind us about the importance of the role we, as care providers, each play in the lives of our young patients.
The Path Ahead
We had the incredible opportunity to hear from a diverse panel about where the next healthcare dollars should be spent in improving care. We heard about the importance of integrating health disparities studies and interventions into our frontline trials, the need for improved psychosocial supports for patients and families, and the future potential of gene sequencing for both early detection and targeted therapy in childhood cancer. Chantelle Bacon and Iain Macri of Fight Like Mason Foundation and Mason’s parents, emphasized the need to provide education and support to physicians in recognizing red flags to enable earlier suspicion and diagnoses of childhood cancers. At the end, it was clear that a comprehensive approach that encompasses all of these elements is imperative.
POGO has shown us over 40 years that we are better together and that our collaboration and collegiality is what builds our successes. Cheers to 40 years of POGO and to the successes to come!
By Dr. Jennifer Seelisch, Director, Pediatric Undergraduate Medical Education, Children’s Hospital, London Health Sciences Centre. Dr. Seelisch was the 2023 recipient of the inaugural POGO Early Career Professional Award.
POGO Pre-Symposium Nursing Seminar Amplifies Nursing Perspective on Childhood Cancer Care
By Denise Mills
On Thursday, November 2, POGO’s 2023 Pre-Symposium Nursing Day presented a rich offering of niche programming that attracted more than 130 nurses and other allied healthcare professionals from across Canada.
Dr. Kitty Montgomery set the stage by discussing Patient Reported Outcomes (PROs), a theme that resonated throughout the entire Symposium. She highlighted how nurses are uniquely positioned to help children voice their symptoms, which is critical to patient-centred care. In her presentation on bioethics at the bedside, Dr. Kim Pyke-Grimm brought the issue of moral distress to the forefront and provided examples of ethics liaison programs.
We heard from many of Ontario’s skilled nurse practitioners as they shared their knowledge and leadership in such areas as late effects of neuroblastoma, skin care for patients receiving MEK inhibitors and providing care with blinatumomab.
The importance of supportive care was a central theme of the day. Dr. Lindsay Jibb shared her findings from her study on “Parental Distress and Trauma in Parents of Children Diagnosed with ALL.” We were also transported into the world of preventing and managing mucositis and how nursing can play a role in implementing clinical practice guidelines. We learned about the role that nurses play in providing care and discussing sensitive topics when caring for adolescent and young adult cancer patients and survivors, and we explored essential knowledge and skills to bring into practice when caring for children with cancer and autism.
Nurses comprise the highest number of healthcare professionals working in pediatric oncology, and this day was important in bringing these clinicians together from across Ontario and beyond to share and discuss nursing practice in caring for patients and families faced with a childhood cancer diagnosis.
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
