In the News

French language Counsellor Builds Trust, Breaks Down Barriers

“I started my working life as a French teacher. From there, I worked for many years with the Ontario Autism Program as a consultant to the school boards helping students on the spectrum successfully transition to school. Last year I was hired by POGO to apply my professional advocacy skills to support brain tumour and childhood cancer survivors in achieving their school, work and life goals. Thanks to funding from the Slaight Family Foundation in 2021, Francophone survivor clients in the POGO School and Work Transitions Program can now receive care in their native language.”

Carol Perry, POGO School and Work Transitions Counsellor

Support to explain the complexities of being a young adult with cancer

The profile of a POGO Transitions client inherently makes communication complex. The age range of most of our clients tends to be from late teens to early twenties. It can be difficult for survivors to express the health difficulties that they have experienced on top of the regular challenges that come with becoming an adult. When you think about the difficult social, emotional and psychological issues survivors deal with, and their personal health challenges (physical and learning), the conversations they need to have with health professionals, colleagues and/or school staff can be very loaded, emotional and complex. Being able to express themselves and receive information in their mother tongue shows respect and helps us get to the root of their issues quicker. It also helps them feel more comfortable and at ease.

Help interpreting technical information critical for a successful future

Sometimes our POGO Transitions clients need an IEP (individual education plan: PEI en français) and unique accommodations to facilitate a smooth transition from high school to post-secondary education and work. A neuropsychological evaluation gives the big picture of a survivor’s cognitive and learning profile. It describes how their brain processes new and novel information, and it outlines their cognitive strengths and weaknesses. The information in the French neuropsychological report is technical and needs to be communicated to our Francophone clients’ French-speaking communities including, their families, school and workplaces. My ability to interpret and relay the information is an asset. I am also able to translate this critical information to unilingual English colleagues

“C'est important pour moi d'avoir une conseillère qui parle français pour que je puisse bien comprendre les stratégies qui me sont données. Ça rend les choses plus simples et plus faciles, ce qui est particulièrement utile lorsque je suis confrontée à de multiples défis.”

“It’s important for me to have a counsellor who speaks French so that I can better understand the strategies she is giving me. It simplifies things and makes it easier for me, which is particularly useful when I am facing multiple challenges.”

Justine is a brain tumour survivor who does well academically but experiences generalized fatigue. Her processing speed is slower because of the radiation treatment she experienced in 2020.

Making delicate conversations easier for students in cancer treatment

The Slaight Family funding helped launch a pilot project that allows me to work with teens who are transitioning from high school to post-secondary education while in active cancer treatment or palliative care. Interacting with these clients requires a different level of compassion, as patients and families face different challenges (including medical disabilities) and can be very emotional. These delicate conversations with Francophone families and school/university/college staff in their native tongue not only makes things simpler but is also a courtesy that these families deserve during a very difficult time in their lives.

Active listening and effective communication are central to every interaction with my clients. Communicating in the preferred language of my client builds trust and breaks down barriers. This also allows me the privilege to be a proactive advocate within the education system for clients and their families.

A grateful merci to the Slaight Family Foundation for supporting our services in French for our Francophone clients and their families.

by Claire Slaughter

The Options are Limitless When it Comes to Raising Money for Kids with Cancer!

Our third-party fundraisers have done some amazing things to raise money for childhood cancer care. Hosting an event in support of POGO is only limited by the extent of your imagination. You can throw a themed party, organize a competitive dodgeball tournament, cycle across Ontario, shave your head, create a team challenge at your office, even workout in your PJs to raise awareness about the unique issues young cancer patients face.  

Have an idea but don’t know how to get started? Our team and easy-to-use fundraising platform are here to help! We can brainstorm your vision to help maximize your recruitment/attendance/fundraising, and we have pledge forms, videos and marketing materials to help make your event a HUGE success.

Holding an event for POGO is a meaningful way to make a difference in the lives of children and youth with cancer, survivors and their families, and it can also be a fun way to engage your friends, family, classmates and colleagues.

What will you do?

Check out POGO’s easy-to-use fundraising platform for more ideas

by Claire Slaughter

POGO Satellite Clinics Mark 25 Years of Providing Care Closer to Home

What is the POGO Satellite Clinic Program?
The POGO Satellite Program is a networked, shared-care system based on a partnership between POGO, eight community hospitals and the specialized childhood cancer programs at SickKids (Toronto), McMaster Children’s Hospital (Hamilton), Children’s Hospital (London) and CHEO (Ottawa). POGO Satellite Clinics are located in the community hospitals and enable aspects of a child’s care to occur closer to home. Each Clinic and the children’s hospital with which it is linked work collaboratively to provide integrated, seamless care for children with cancer and their families.

What are the POGO Satellite Clinics located?

POGO Satellite Clinics are in these communities across Ontario:

1. Grand River Hospital, Kitchener-Waterloo Campus
2. Trillium Health Partners, Credit Valley Hospital Site (Mississauga)
3. Southlake Regional Health Centre (Newmarket)
4. Orillia Soldiers’ Memorial Hospital
5. Peterborough Regional Health Centre
6. Scarborough Health Network, Centenary Hospital
7. Northeast Cancer Centre, Health Sciences North (Sudbury)
8. Windsor Regional Hospital, Metropolitan Campus

“Having a POGO Satellite Clinic so close to home cuts down on the cost of gas and, more importantly, helps us maintain some semblance of regular life. When Ryla has a fever, the POGO Satellite Clinic is our ­first stop. This minimizes the disruption in our lives and allows us more family time.”
- Roberta Webster, parent

How does the POGO Satellite Clinic program help the overall healthcare system?

POGO Satellite Clinics enable the hospitals with a specialized childhood cancer program to increase their capacity to provide more complex treatment and/or monitoring.

“Having patients seen and treated closer to home has allowed the healthcare staff and resources in specialized childhood cancer programs to focus on patients that might require more specialized care. It also eases both in- and out-patient numbers in these programs on any given day, allowing for more time with each family. The built-in communication between the POGO Satellites and the specialized childhood cancer programs ensures seamless care. Our families report their visits at POGO Satellites as a very positive experience. They report the kindness of staff and individual care received as fostering a welcoming environment that has the additional benefit of proximity to their home.”
- Dr. Carol Portwine, Division Head, Department of Pediatrics, Division of Hematology/Oncology, McMaster University

How is the geographic location of a POGO Satellite Clinic determined?

Many factors are considered when determining the geographic location of a POGO Satellite Clinic including, but not limited to, caseload in the region and geographic distance to a major hospital with a specialized childhood cancer program. POGO helps ensure that healthcare teams have the right mix of oncologists, nurses, social workers, pharmacists and other experts to meet the need.

“The POGO Satellite Clinic Program has been instrumental in allowing our families from Northern Ontario to get the specialized care they need close to home.  It allows patients to remain with their families at a challenging time in their lives, and also with their friends and community supports.  Working with the POGO Satellite Clinic at Northeast Cancer Centre, Health Sciences North really shows how we are all doing the best for our amazing patients.”
- Dr. Donna Johnston Chief, Division of Hematology/Oncology, CHEO

How can families be sure they are receiving the best care at a POGO Satellite Clinic?

POGO creates and updates operational standards and guidance documents so that comprehensive, technologically-advanced childhood cancer care can be delivered as close to the child’s home as is compatible with the level of care required. That care also has to be equivalent to care received in a specialized childhood cancer program. POGO remains an important resource in promoting partnerships between healthcare teams across the child’s treating hospitals, monitoring activity in the Satellite Clinics and promoting early referral to each community hospital to maximize capacity to provide complex cancer treatment closer to home. POGO also provides regular professional development opportunities for healthcare team members.

“We have a close-knit team. I love our work family of registered nurses, a registered dietitian, Satellite lead pediatrician, child life specialist, welcoming receptionist and music therapist.”
- Deb Crann, POGO Satellite Clinic Nurse Coordinator, Grand River Hospital

by Claire Slaughter

When Your Baby Has a Brain Tumour

Even though I was a new parent, I had this intuition that something wasn't right with my baby girl. Ryla's head seemed too big for her body when I compared her to other babies. She also developed “café au lait” spots on her body which I assumed were just birthmarks but were actually a sign of an underlying condition. At six months old, Ryla was diagnosed with neurofibromatosis, a rare genetic disorder that typically causes benign, slow-growing tumours on nerve tissue.

At ten months old, I noticed Ryla's eye wasn't tracking correctly. Our pediatrician didn't see anything unusual, but he knew we needed to monitor Ryla closely because of her diagnosis, so he referred her to a pediatric ophthalmologist. Ryla's condition changed quickly over the next month, and we ended up at SickKids before we even got to the appointment.

It started on Christmas day at my parents' house. Ryla's left eye was swollen and wouldn't stop watering.

A few days later, she woke up from a nap, and we were shocked to see her eye had gone from blue to brown. My husband, Rob, and I rushed her to Credit Valley Hospital and then to emergency at SickKids

Getting the diagnosis

Ryla had a mass compressing her optic nerve, causing proptosis (bulging) and blood leaking into her eye. She needed an ultrasound and an MRI to uncover what the mass was and its exact location. The wait was excruciating for us and very uncomfortable for Ryla, who went 24 hours on IV nutrients only.

Finally, at 11 p.m. on New Year's Eve, Ryla got her MRI, and a few hours later, we were told our baby had an inoperable brain tumour.

We were sent home with the knowledge that the next step would be chemotherapy, but because the quick growth of Ryla's tumour was atypical, it would need to be evaluated by the tumour board at SickKids to determine the best course of treatment.

Typically, this type of tumour would not get biopsied because the procedure can cause blindness, but since her condition changed so quickly, the hospital staff felt the tumour was aggressive and wanted to know what they were dealing with. An optic nerve surgeon explained that he would try to go between the bone and eye to do the biopsy but warned us that he might need to remove some of her bone to get a clear path to the tumour.

Celebrating Ryla's first birthday

We had to do something special for Ryla's first birthday because we thought it might be the only one we would get to celebrate.

Ryla's birthday occurred just a few days after the diagnosis and before the biopsy. We would not have made a big fuss because she was so young, but now that her future was uncertain, we couldn't let it go by without marking the day.

While driving from Toronto to our home in Streetsville, our friends and family rallied to decorate the house, and we had a huge celebration. It was incredibly touching to see the beginning of our support network forming.

It took about two weeks, but the biopsy showed that the cancer was not as aggressive as they had feared.

Ryla was approved for a clinical trial that included weekly chemotherapy at the hospital, but the results were not promising for her. She was approved for a second clinical trial involving a daily oral medication, but they had to alter the recommended dose to try to avoid any damage to her liver. It worked! Her tumour stabilized as long as she was on the medication, but started to grow again when the clinical trial ended. Luckily, she has been granted compassionate access to the clinical trial chemo which she continues today.

“It was hard to hear that Ryla was blind in one eye, but when the doctors told us they couldn’t resect the tumour to prevent it from spreading to her right eye, it was devastating. Removing her left eye will make her more comfortable, but we need to rely on the chemotherapy to protect the vision she has. It makes her future uncertain.”

-Rob McCormack

Getting care closer to home

As life shattering as this has been for us over the last 4.5 years, Ryla takes it (mostly) in stride. She is an inquisitive, smart, sassy kid. Ryla is always happy to go to the POGO Satellite Clinic at Credit Valley Hospital near our house—she loves the toys, and the staff make her feel like a superstar. She has even learned to advocate for herself—letting them know that she doesn't want eye drops if they aren't necessary and asking for the child life specialist when she feels vulnerable.

POGO has been with our family from the start. When Ryla was diagnosed, a POGO Interlink Nurse was assigned to help us navigate the challenges ahead. I have been on maternity leave and critical illness leave since Ryla was born, so our income has decreased significantly, but our expenses have increased. When you spend several days in a row at the hospital, you buy food and other things that you wouldn't have to if you were at home. Our POGO Interlink Nurse pointed us to resources like the POGO Financial Assistance Program to help pay for out-of-pocket costs. And having a POGO Satellite Clinic so close to home cuts down on the cost of gas and, more importantly, helps us maintain some semblance of regular life. When Ryla has a fever, the POGO Satellite Clinic is our first stop. This minimizes the disruption in our lives and allows us more family time. We are not out of the woods yet. Ryla's second surgery has not been scheduled yet, and we don't know what post-surgery will look like, but we know our POGO supports will help us get through it.

By Roberta Webster

by Claire Slaughter

The Trouble with Wigs when You’re a Black Teen with Cancer

Cairo Gregory was 15 years old when she was diagnosed with cancer. As a young woman of colour, she has found that the lack of representation of Black cancer patients in the media, as well as the lack of cancer-related resources specific to Black women, has added to her challenging journey.

In mid-March 2022, as my 3rd-period class ended, I doubled over in excruciating pain. An ultrasound a few weeks later revealed that I had a mass the size of a small coconut in my uterus. The hospital ordered blood work and lots of tests and then sent me home.

A few days later, my mom texted while I was at school and told me she was waiting outside to take me to emergency. The tests revealed that my hCG hormone levels were very high—a typical occurrence during pregnancy (which I knew wasn't the case), but it is also a tumour marker. 

Ultimately, my official diagnosis was ovarian cancer with an immature germ cell tumour—a very rare form of ovarian cancer. My treatment protocol was nine weeks of chemo followed by surgery on July 12, 2022. The worst part of chemo—at least physically—was that my lungs filled with fluid, and my heart started swelling. My body wasn’t expelling the fluids being pumped into it fast enough. It was hard to breathe, and I felt like I was drowning from the inside out. It was challenging to manage that. I also didn’t expect all the physical and social repercussions of treatment.

Of course, I had seen young characters on TV or in the movies who had cancer, but none of them were Black. The depictions of the frail, skinny, pale patient did not match my own experience. I gained weight. I developed dark spots on my body, which looked like permanent dirt on my mixed skin. And my hair fell out in patches—making me feel insecure and not wanting to see anyone.

I got excited when it was suggested that I visit a hospital wig salon and accessories boutique, but that proved to be a bust. The wigs were the wrong colour and texture—usually straight to wavy; they didn’t stock wigs geared to a teenager of colour who wears her hair naturally. So a resource that was created to help cancer patients look and feel good wasn’t equipped to help me look and feel good. My cultural identity was excluded from that space. I left the salon feeling deflated—it was isolating not to have the same resources available to me that other young women might have.

Unfortunately, there weren’t a lot of Black people around me or in the media talking about cancer and it made it harder for me to find options available to me.

In retrospect, my experience as a Black young woman with cancer taught me the importance of representation and access. It is essential for Black children with cancer to have access to wigs that match their hair texture and skin tone. No one should be made to feel like they have to settle for an ill-fitting wig. The industry needs to recognize that people come in all shapes, sizes and colours, and that diversity should be reflected in the products that are offered. I hope that my story can inspire positive change and make the process a little less challenging for future generations.

by Claire Slaughter

Research Study Reveals Merits of POGO Transitions Program

The POGO School and Work Transitions Program is one of only a few established programs designed to help childhood cancer survivors facing educational and employment challenges achieve their academic and work goals. But does it work? (Spoiler Alert: it does!)

Goal Attainment Scaling (GAS) is a method used to evaluate a student’s functional change after an intervention. The objectives of the POGO study were to:

1. describe the Transitions Program’s novel implementation of Goal Attainment Scaling (GAS) to evaluate an educational and vocational counselling program
2. analyze patterns of program engagement and client outcomes, according to demographic and diagnostic ranking

Read the study here.

by Claire Slaughter

Health Monitoring at a POGO AfterCare Clinic Gives me Peace of Mind (Most of the Time)

As a survivor of childhood cancer, I know many would think that once treatment ends, the struggle is over and that the hardest part is finished. However, I know for me and many other survivors I have spoken with, treatment was the easier part of the cancer journey. You had a protocol (a treatment plan), support and resources that seemed to me to be available 24/7, and a team that you could rely on for information. When I entered survivorship as an adult, I immediately felt the difference; mostly, that resources and supports didn’t feel as close at hand, and I had to figure out a lot of things solo.  I worried about a possible lifetime of late effects, never really knowing when they could arise.  

I was diagnosed with acute lymphoblastic leukemia in November 1998 when I was 10 years old. I completed three years of chemotherapy and then in November 2002 I relapsed. When my treatment ended in 2005—chemotherapy and cranial radiation—I was 18 and no longer able to be seen at my pediatric centre. It was five years after my discharge, at the age of 23, when I learned about the POGO Provincial Pediatric Oncology AfterCare Program. I was so excited to self-refer to the Program! Ever since, I have been seeing my team at the POGO AfterCare Clinic at Princess Margaret Cancer Centre yearly and it changed everything for me in terms of my survivorship.

When I first started my follow ups with the POGO AfterCare team, we had some discussions about fertility. I admit I wasn’t really interested in the topic at the time, so I never took the opportunity to pursue their referrals. However, when I turned 27 and they asked me if I wanted to explore my fertility options, I said, “yes!” I had two referrals over two years and both physicians helped me better understand my options.

In 2017, at age 30, I was diagnosed with a secondary cancer (unrelated to my childhood cancer), and that prompted me to request a referral to a genetics program to see if I had any genetic predisposition to cancer. While I’d had a similar referral before, this time around everyone agreed it was more important than ever. The outcome is that I now have a more thorough understanding of my risk from a genetics perspective.

I have also been referred to neuropsychology (for testing for accommodations for school), imaging (MRI, ultrasound and bone density) as needed or supported by research, physiatry (for pain management) and ophthalmology, amongst many other areas of care. I am also reminded by my team to see my optometrist for any eye issues, my dentist for oral health and to make sure I see my primary care provider/family doctor in between visits for other health issues that are not cancer related.

But the mind is a funny thing. Yes, I trust my AfterCare team and have the utmost confidence they would continue to support any kind of referral I need. Yet, I worry that I may be at risk of thyroid and breast cancer due to the radiation I received as part of my treatment when I relapsed. My POGO AfterCare team is so kind to reassure me at every visit (literally) that I am not at an increased risk and they explain to me why. These ongoing conversations put my mind at ease and I am very appreciative of the time the team takes with me, each and every visit.

I realize now, that, alongside my primary care provider, the POGO AfterCare Clinic is the best place for me as a childhood cancer survivor. They are able to monitor for possible late effects and refer me to services within my cancer centre so that my care is in one place. If I ever have reasons to believe I need to be seen sooner because of a cancer-related side effect, I know I can call or email the Clinic and they will respond accordingly.  

AfterCare is not about seeing my healthcare team for everyday issues, but ensuring that the treatment I had as a child does not impact me as an adult and, if it does, it can be caught early. It makes me feel secure, listened to and in control of my survivorship.

Kirsten Efremov, MPH, is a childhood cancer survivor who has been monitoring her health annually in a POGO AfterCare Clinic since 2010. She earned her Master of Public Health at Brock University and works at POGO supporting the organization’s survivorship, psychosocial and strategic initiatives. Kirsten believes in giving back to the community and volunteers with causes that support children and youth going through cancer treatment, and survivors of childhood cancer.

by Claire Slaughter

Reflections on the 2022 POGO Symposium by Dr. Adam Fleming

CNS tumours under the microscope

The return of the POGO Multidisciplinary Symposium on Childhood Cancer to an in-person event (with a virtual component), was a memorable experience. It was the culmination of two years of disrupted planning and pivoting as we navigated the ever-changing concept of conferences in a pandemic world. While there was an air of speculation about whether we would be allowed to gather together to learn and share in the fall of 2022, the intense work leading up to this event was gratifying.  

For me personally, the POGO Symposium had a welcoming, reminiscent feel. The theme of CNS tumours is very much aligned with my clinical interest and expertise, and I was reminded of attending a POGO Symposium in the late 2000s on this same topic, when neuro-oncology was becoming the focus of my practice. To see so many iconic people in this field who are now my colleagues and friends, was very meaningful. As I listened to the many excellent talks and reviewed some fascinating posters, I could really reflect on the big picture and the progress in this field. 

Honouring Dr. Bouffet’s career of treating CNS tumours

And to have a glimpse at the big picture, one could look no further than to Dr. Eric Bouffet, a preeminent pediatric neuro-oncologist, recently retired. This year’s Symposium was a chance to honour and reflect upon his extraordinary career, and also for us to hear from his many different perspectives as he shared stories of what it took to care for children with CNS tumours over many decades, and how pediatric neuro-oncology evolved to be the sub-specialty that it is today. With humour and poignancy, Dr. Bouffet graciously gave two talks that were the perfect “bookends” to a great conference, opening Friday morning with his personal journey and closing out Saturday exploring the many relationships and connections he has built over the years. I’m sure I was not alone in feeling inspired by his lifetime of contributions.

Exploring genetics, data, research and a new era of treatments

Drs. Anita Villani and Anirban Das explored their fascinating clinical and research work in the field of genetics, piecing together the threads that underlie the risk some children and their extended families face. They taught us how meticulous tracking of rare disease patterns can not only open up our understanding, but lead to surveillance protocols that can make a positive impact and how this work will help us expand our knowledge of what drives pediatric cancers.

I had the privilege of moderating the workshop “Harnessing the Power of the Rare Pediatric Tumour Cancer Registry” with Drs. Lafay-Cousin and Annie Huang. They weaved a story of gathering global data in order to help understand the rarest of the rare CNS tumours, and explored how this could be used to push forward a new generation of treatments. The workshop on end-of-life care was given by two expert speakers, Sondra Leblanc and Kathy Perko, who captivated the audience with real-life experience and insight into a heartbreaking world that they have the honour of being invited into.

While novel scientific discoveries and treatment protocols address the “now” for our patients, Dr. Hallie Coltin presented research about “big data” on the other end of the spectrum—for those who survive into adulthood, and the overall consequences to their health and lives that the burden of cancer and its treatment can create. This paired well with an exploration by Dr. Joel Tourigny into mental health outcomes, which wove research outcomes with an in-depth understanding of how cancer can interact and interfere with the developmental trajectory of children, adolescents and family members. Dr. Tourigny reminded us that we need to understand the larger impact of what we do today in order to improve tomorrow.

Developmental stage, not just chronologic age, key when caring for AYAs

Over the years, POGO has become a champion for the adolescent young adult (AYA) cancer population, and this was evident in Dr. Brooke Cherven’s sexual health talk, followed by an interdisciplinary panel of adult practitioners who were committed to breaking down perceived barriers for diagnosis and treatment in a world where chronologic age can determine care. These talks challenged us to remember that our patients may abruptly “graduate” into the adult healthcare system on a specific date, but their developmental stage, lived experiences and tumour biology all have their own timeline.

Patient and family stories inspire

The buzz around this year’s new addition of digital storytelling was unanimous—from inspiring to tear-jerking, the visual narratives blew us away with their creative and high-quality portrayal of patients’ and families’ lives. Each one had a different texture and brought an important part of the cancer experience to the forefront. In addition to these stories, a workshop on family decision-making featuring two mothers, Jennifer Baltzer and Cindi Shoot, and a veteran nurse expert in the field, Janet Deatrick, had a tremendous impact on the audience. I am not sure there was a better way to weave the patient and family experience into this year’s Symposium and the audience was deeply moved by the words, stories, music and visuals that were shared throughout the two-day conference.

Dr. Adam Fleming is a staff hematologist-oncologist at McMaster Children’s Hospital in Hamilton, Ontario; an associate professor of pediatrics at McMaster University; and a member of the planning committee for the 2022 POGO Symposium.

by Claire Slaughter