In the News

POGO Announces CEO Search

Message from POGO Board Chair James Scongack

The team at the Pediatric Oncology Group of Ontario (POGO), along with our many dedicated partners, continues to work as hard as we can every day to ensure everyone affected by childhood cancer has access to the best care and support. The organization has continued to make substantial progress in many areas and we are committed to building on this going forward. 

This progress and passion doesn’t happen without strong leadership and dedication. Jill Ross has served as the CEO of POGO since 2018 and has been instrumental in this progress as a true champion and leader of this important work. Jill has informed us of her intention to step down as the CEO after a very successful tenure. Jill remains wholeheartedly committed to POGO’s mission, and to her ongoing work with you, our partners in childhood cancer care. 

The Board has commenced a formal search process for Jill’s successor. This process is being led by a Board-appointed CEO Search Committee and we’ve retained Boyden, given their extensive experience in executive search and the health/not-for-profit sector, to advance this important process in a comprehensive manner. Following consultation and incorporating feedback from the Board, senior staff, partners and other stakeholders, the posting for this role has been made public and can be found here. Questions about the posting can be addressed to Boyden. 

Through this process, we will take the time to ensure we find a CEO that meets the needs for the future of POGO and will update you when this process is completed.  

In the meantime, it's business as usual for POGO. We will continue the important work to move the organization forward, advancing the supports, engagement and actions to achieve an excellent childhood cancer care system for children, youth, survivors, and their families and healthcare teams, in Ontario and beyond.    

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by admin

POGO Statement on Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month and a time to raise awareness and express support for the children and youth with cancer, survivors of childhood cancer, and their families. 

The burden of a childhood cancer diagnosis on families is immense, affecting them emotionally, socially, financially and countless other ways. In Ontario, from the time of diagnosis, childhood cancer patients have access to a coordinated system of care in leading hospitals across the province.

Pediatric Oncology Group of Ontario, POGO, is a made-in-Ontario solution, working in partnership with these hospitals and the Ontario government to help ensure everyone affected by childhood cancer has timely access to the best care and support.  

This September, we acknowledge the children and youth in treatment or follow up care, the survivors of a childhood cancer diagnosis, the loved ones lost, and their families; and we are grateful to the many incredible organizations and multidisciplinary healthcare teams caring for them, and to those who provide other invaluable supports.

Watch the video statement from Premier Doug Ford, Health Minister Sylvia Jones and POGO Board Chair James Scongack.

Statement from Premier Doug Ford

“September is Childhood Cancer Awareness Month. Throughout this month I encourage everyone across Ontario to help raise awareness for this tragic disease that affects thousands of children and youth in our Province. Not only is cancer devastating to those diagnosed, it also deeply impacts their families in countless ways. I want children and youth, as well as their parents, siblings, friends and loved ones to know that they have a team Ontario on their side as they fight through this terrible disease. I want to thank the Pediatric Oncology Group of Ontario for their support in providing patients and survivors with world class care. I look forward to continued collaboration.”

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Statement from Deputy Premier and Minister of Health Sylvia Jones

“This September, I want to recognize children and families across Ontario impacted by childhood cancer. September is a time to recognize the courageous children who are receiving or have received treatment and thank their families for staying strong through their treatment journey. Cancer touches so many lives and I want to thank the dedicated Pediatric Oncology Group of Ontario who advocates for patients and survivors through these difficult times. Our government will continue to work with you and our hospital partners to ensure children in Ontario have access to the care they need and deserve close to home.”

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Statement from POGO Board Chair James Scongack

“Cancer is something that impacts us all, whether it's ourselves our loved ones our family members, our friends, our neighbours or individuals in our community. At some point or another in all of our lives we will be impacted by cancer. September is Childhood Cancer Awareness Month in Ontario and throughout September it's a really important opportunity for us as a province to come together to raise awareness around childhood cancer but most importantly come together as a province to do everything we can to be there for those kids and families who are battling childhood cancer. The partnership between the Pediatric Oncology Group of Ontario and the Ontario government and our entire hospital and pediatric oncology sector is a good example of how we can come together as a province and be there for families and kids not only today during Childhood Cancer Awareness Month but every single day of the year. I want to take this opportunity to send a very clear message to the families and kids that are battling childhood cancer, not only today but in the future, that we have your back; that we will continue to work as hard as we can every day to not only raise awareness but to continue to do better. Finally, I want to recognize the frontline healthcare professionals; you do incredible work. We're proud of you and during September as Childhood Cancer Awareness Month, let's not only think of the families who are challenged with childhood cancer and battling it today; let's also thank those frontline workers who come to work every single day under extraordinary circumstances.”

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by admin

French language Counsellor Builds Trust, Breaks Down Barriers

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

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.

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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.

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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

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by Claire Slaughter

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

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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

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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.

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.

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

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

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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.

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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.

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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.

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by Claire Slaughter