transition

My Fertility Journey

Author: Cassandra Watson

Photo above: Left: Cassandra after first spinal surgery. Right: Cassandra now.

"Could my past medical experiences have an impact on my ability to have biological children in the future?"

Transitioning from pediatric to adult care has been quite a journey, and it is still challenging at times. I went from having a dedicated team supporting me in every aspect of my life to feeling like I was navigating my health on my own. I was familiar with Princess Margaret Cancer Centre from my radiation treatment, but the whole experience was pretty overwhelming. I made sure to ask my POGO Aftercare Clinic Nurse lots of questions, everything from learning how to check for lumps in my breasts? to understanding the potential impact of my past treatments on my body. One particularly important question I had was about my fertility: Could my past medical experiences have an impact on my ability to have biological children in the future?

That single question changed my life.

I learned that my AMH (anti-müllerian hormone) levels were low, indicating a low egg count, which led me to Mount Sinai Hospital’s fertility clinic. At 22 years old, the news that I didn't have much time was a shock. I had to weigh my options: have a child soon, freeze my eggs, or consider alternatives like egg donation or adoption. In the end, I chose egg freezing, which significantly shifted my life plans. The treatments were tough and the costs made things even more complicated. The emotional toll is substantial, especially since, despite all my efforts, there is no guarantee of success.

My radiation treatment affected my fertility, which is a topic that doesn't always get the attention it deserves. While fertility preservation is starting to come up more frequently in discussions with younger patients, it wasn't something that was brought up in my discussions with my health team. I feel this gap in communication and resources is an important issue that deserves more attention.

Navigating my fertility journey has been quite an eye-opening experience. It is understandable that when you’re focused on managing an illness, fertility can sometimes take a back seat. But for many, the ability to have children is a big deal. It can be frustrating to miss out on preservation opportunities simply because of a lack of information. It feels a lot like missing the boat. And who wants to miss the boat?

These experiences have inspired me to become a voice for others in similar situations. Advocacy goes beyond just pushing for medical advancements; it is also about making sure patients have the information and support they need to make informed choices about their futures. By sharing my story at events like the 2024 POGO AfterCare Education Day and through this article, I hope to encourage others to ask the right questions, seek the information they need and stand up for their own needs. If there is one lesson I have taken away, it is that you sometimes must be your own best advocate.

Recognizing that my experiences can help others has truly changed how I view my health challenges, seeing them not just as a burden, but as opportunities to make a positive impact in the community. Through advocacy, I aim to bridge the gaps in care and ensure that the next generation of patients has access to comprehensive support, particularly when it comes to fertility awareness. As I continue on this advocacy journey, I am genuinely excited to see what the future holds. My journey has shown me that while medical treatments are crucial, so is the support for the emotional and future aspects of life, like fertility. As health care continues to advance, let’s make sure to include these important conversations, making sure every child has the chance to lead a fulfilling life, both during and after treatment.

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by cjordan

Creative Corner with Cartoonist Erica

Author: Erica DiVincenzo
Diagnosis: Ewing's Sarcoma (right arm).

I am a cartoonist. This is how I see the world in my mind. This is how I see people and animals. As early as Kindergarten, almost any attempt I made at art appeared as cartoons. This tendency became more obvious when I was 7 and spent a year at McMaster Children’s Hospital for cancer treatment. To make the time pass, I would draw. Almost always cartoons. I am very thankful that the doctors saved my drawing arm, which had bone cancer in it. I am still making cartoons every day and finding unique ways to use them in my career as an artist. Cartoons bring a lot of humour and joy to life.

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by cjordan

Navigating Ontario’s Accessibility Act as a Childhood Cancer Survivor

Regardless of whether a disability is visible or not, many of us encounter significant barriers and discrimination in everyday life—be it in customer service, access to information, employment, transportation, or even within natural and constructed environments. Often, these barriers stem from a lack of adherence to The Accessibility for Ontarians with Disabilities Act (AODA) of 2005. It’s important to remember that it isn’t simply about visual appearance; a brief scan doesn’t ensure adherence to the "Customer Service Standard" of the legislation.

I’ve always had an interest in public transit, so, I’ll use that as an example:

Imagine a TTC driver shouting at you to “use the back door!” While it’s generally advisable for passengers to use the back door to facilitate smoother boarding, those with disabilities should have the option to use the front door if needed. Disabilities aren’t always visible, and drivers should be cautious not to judge based on the presence of assistive devices alone. After all, the devices are just tools; the person’s disability is what matters.

Our experiences with accessibility can vary widely, and I encourage you to reflect on your own encounters with barriers and challenges. If you’re not yet familiar with The Ontario Human Rights Code and The Accessibility for Ontarians with Disabilities Act, 2005, I strongly recommend taking the time to review these important pieces of legislation.

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by cjordan

Not so Alone After all

Author: Sara Payne

When I was in hospital, anytime I felt like giving up I would look outside and see my future self in an ambulance, helping others. I was healthy and happy in my uniform. I would also envision myself in my future apartment, decorated the way I want it and my cat lying by the window enjoying some sun.

There have been times I thought I wasn’t going to be able to achieve my dream. But knowing how badly I wanted it to become a reality made me work that much harder. I wasn’t going to let cancer take this away from me. One of my favourite quotes is, “You want it because your future self already has it.” It gives me motivation to work hard and keep going.

I have a lot of good memories with my mom in the hospital. I also met some amazing people and even made some friends for life. Connecting with teens my age who went through the same thing I did and hearing their stories of survival helped me feel more at ease.

Regardless of what someone is dealing with, I think everyone has one thing they can hold on to even if they may not realize it. Maybe it’s a feeling, or a person or a small thing you do daily.

It can be hard to figure out what it is because our brain can get so filled with the stresses in life.

I think I’m now at a point where I’ve learned to enjoy my own company. I have a few solid friendships I wouldn’t trade for the world. I have good relationships with my cousins and even when I am physically alone, I don’t feel lonely.

Having cancer, and even being in remission, is such an isolating and lonely experience sometimes, but getting lost in daydreams about my future and listening to music makes me feel less lonely. I truly hope everyone has that one thing to comfort them and bring them joy, even if it's for just 10 minutes a day. I can’t say for sure things will get easier, but I think it’s still worth it.

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by cjordan

Survive

Author: Kayla Russell

"Survive, they said
But I’d rather stay in bed..."

Writing Process: I usually write my poems in a journal and then type them up on my computer just as a second copy or like an electronic diary, if you will. Sometimes I start writing something and then it ends up being completely different. A peaceful, cozy spot where I can curl up or sit comfortably is where I usually find myself writing. Writing is like my release. When I’m feeling sad or irritable, I write. I write to escape, or I write to find some answers. I started writing these poems to help create a safe space for myself to know that it’s okay to feel however I feel. Also to remind myself that there's no right or incorrect way to feel about what happened to me; it’s a journey.

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by cjordan

Graduation Coach for Black Students Promotes more than Academic Success

POGO Counsellors strive for excellence in providing culturally-aware support to the diverse group of survivors we work with. Every February we celebrate Black History Month, which gives us an additional opportunity to learn about and reflect on Black culture and apply what we have learned to our work with students.  A resource we want to bring attention to this year is the Graduation Coach for Black Students (GCBS) program through an interview with POGO Transitions manager Barb Williams and Ms. Breanna Phillip (Coach Bre), a passionate and inspiring coach in the Halton District School Board.

Barb: What is your role as a Graduation Coach for Black Students and how long have you been a coach?

Coach Bre: Coaches support Black students and families in navigating their educational experiences and ensure that they are given the tools and circumstances to thrive in the school system. While we offer direct support to students, another significant part of our role is working with school staff to increase their knowledge and understanding of the impacts of anti-Black racism on the educational experiences of Black students. We also hold staff and faculty accountable for ensuring safe and inclusive educational spaces for Black students. Additionally, we aim to support and advocate for parents of Black students, who also face the exact oppression, racism and alienation that their children experience.

The Halton District School Board has a multi-year strategic plan which includes tenets of equity & inclusion and mental health & well-being.  The GCBS program offers services, initiatives and programming that foster equity and inclusion for Black students. Coaches also recognize the experience of anti-Black racism can be extremely traumatizing and directly impacts the mental well-being of Black students, so this program is in line with that component of the multi-year plan as well.

The GCBS program will have been at the Halton District School Board for one year as of April 2023, but has been at other school boards since 2020. I started in this role when the Halton District School Board program began.

Barb: Tell us about a particular moment, outcome or activity you are most proud of in your time as a coach.

Coach Bre: There are many, but one I’m most proud of is the outcome of an affinity space in one of the five schools we work at.  An affinity space is essentially a classroom that the Black students can make their own by decorating with visual representations of Blackness, for example. An affinity room is designed to be both a place of belonging and a space that belongs to Black students. However, in this instance, when the students were not in the affinity room, the area was used by non-Black identifying school staff for other purposes. Students said they felt that “teachers were using a master key to break into their space” and were uncomfortable with this.  I arranged a meeting with the vice-principal and the students. The students unapologetically articulated that this was their space and did not want other people coming into it.  I was so proud of how the students demonstrated their rights and ability to stand up for themselves and their needs.  As a result, an agreement was made that the lock to the classroom would be changed, and the students now have a safe and secure space that is truly their own.

Barb: What has it meant to the Black students to have you as a resource?

Coach Bre: I will start my answer with a quote from a student who, when asked about having access to an affinity space, referred to it as “an oasis.”  She went on to express that when Black students enter the room, nothing out there matters anymore.

The program allows for a space for students to simply be. When moving through very white spaces as a Black individual, there is a lot of performing that has to happen, and that gets exhausting. With the coaches, students get to just be themselves, and that’s more than enough. Additionally, students have the space to speak out about experiences that have various nuances due to their identity, and they have the safety of knowing I will understand without them having to over-explain. This is not likely an opportunity they have had before.

Additionally, this program ensures that Black student voices are brought to tables where their voices have historically been missing. A Black-identifying staff member sitting at decision-making tables can significantly change a Black student’s educational experience trajectory.

The program also allows Black students to build community and social capital by meeting one another, whereas, historically, Black students have not had the opportunity or space to connect or know each other.

Barb: What does it mean to your education colleagues to have you as a resource?

Coach Bre: Just as with anything else, some people struggle with change, which has been evident. However, others are amazing, excited and open to learning and being held accountable; they know they have caused harm and want to know how to stop causing harm. I am also proud to have been recognized as a recipient of an Inspire Award from the Halton District School Board by the vice-principal of one of the schools where I work.

Barb: How does your presence benefit Black students and the Black student community?

Coach Bre: Number one would be representation.  When I went to high school, there were no Black staff at all.  If there are Black staff at schools now, the majority are not in higher-ranking positions.  They are not at tables of “power” where big decisions are being made.  I am at those tables.  It has been encouraging for Black students to see and know I am at these tables and realize that sitting at them is achievable and they can do it too.

Barb: How can Black students find  a coach at their schools, or can you offer any advice on how students can advocate for adding a GCBS at their school if one does not exist?

Coach Bre: In Halton, although Graduation Coaches are only assigned to five of the many high schools, Black students in schools that don’t have a designated coach can reach out to coaches from schools that do, and we try our best to address their needs.  Before the program expands to a school, we have staff on our Human Rights and Equity team that speak with administrators to determine site preparedness for the program.  We want to be sure that there is pre-work being done by the school and that they are demonstrating their readiness for the Graduation Coach for Black Students program.  We want to ensure that accountability is not placed on the program but that school leaders are held accountable for ensuring that Black students have positive experiences in educational spaces.

Barb: What can POGO Counsellors do to ensure that we provide equitable, safe and informed counselling/guidance to our Black student survivors?

Coach Bre: It is important that as POGO Counsellors you recognize oppression exists not only in school systems but in the medical system. You can best support Black students by understanding how oppression has worked against them, for example, within the processes that have historically excluded their cultural context. Remain curious about culture and, in this case, what is important in Black cultures.  For example, in Black culture, community inclusion is often missed  as desirable when people in the helping profession lack cultural experience and have been educated in a manner that promotes individualism. Severing the tie between child and parent is one of the historical elements of oppression.  It breeds mistrust. So even when working with a student over 18, be conscious of this and consider how to navigate the situation from a place of cultural humility.

Barb: Is there anything else you want people to know about GCBS?

Coach Bre: The title can confuse some people, because we correlate graduation and educational success with academics.  People might think that we only work with students in Grades 11 and 12, preparing them for graduating high school. In fact, it takes more than grades for a student to complete their formal educational journey well. We don’t only want our students to finish well academically; we also want them to finish well emotionally, mentally and socially.

When a Graduation Coach for Black Students sits in on school meetings with or about a student, we are the ones who are often able to see the nuances in a student’s situation through the cultural lens because of where we sit in our identity.  We bring the lens that has been missing for far too long.

Author’s Note: To find out more about the Graduation Coach for Black Students program, please visit the Ontario Government website

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by cjordan

Happy Days Again: My Post-Treatment Cancer Journey

Ella Gwendolyn Jeffery

The first time I had a dressing change, I cried over what my life had become. Three weeks earlier I was healthy and doing all the things an 11-year-old should do—running, climbing, and swimming. Here I was now: fighting a disease that I knew nothing about, except for the fact that it ruins lives. It was ruining mine.

A nurse tried to comfort me by saying, “When this is all over, you’re going to be happy and healthy, and nothing’s going to ever bother you again!” I believed her wholeheartedly; I couldn’t bear to think of any other outcome.

My leukemia did go into remission; the bone marrow transplant cured me of my cancer for good, and I  became healthy again. Achieving happiness was a different story.

I returned to school full-time, less than a year after my diagnosis. School was what I had missed most during treatment, and I was expecting it to be fun. But on the first day of grade seven, I found myself in the bathroom having a panic attack. I was worried about germs and all the things that could make me sick. I was scared that my immune system wouldn’t be able to handle it.

Then there were my classmates. They had changed so much during the year I was away. I suppose I looked different too, but the difference in them seemed so sudden and was scary.

Some days I would be in a fog, remembering physical sensations of the pain I endured and fearing it would return. By mid-week I was overwhelmed and exhausted. I started faking being sick to get out of school early. My mother wasn’t fooled, but she didn’t say anything because she knew I was struggling—not physically or academically, but mentally. My world had almost ended, but I was expected to act like it had just kept turning.

That first year back at school, I began counselling with a wonderful therapist at Oakville Trafalgar Memorial Hospital. It took dozens of sessions before I was even able to talk about my leukemia diagnosis, but my therapist remained patient until the day I was able to say, “On October 18th, 2014, I was diagnosed with cancer.” I was challenged to go through these memories, write them all out, and say to myself, “I was diagnosed with cancer, but it’s gone now. I won.”

When I was asked to write this story about a pivotal moment in my cancer journey, I wondered if it would count to write about the recovery after treatment. But then I realized, a huge portion of recovering from a traumatic event is the mental health process; accepting what has happened to you, and knowing that while your life has changed forever, you can still make happy, timeless memories.

In my opinion, the key to recovering mentally from an event like childhood cancer is to acknowledge what happened, express it in any way that you see fit, and then remind yourself of how hard you fought to beat the illness. After that first writing challenge in therapy, I began to write out every detail I remembered from treatment—thoughts, physical feelings, and descriptions all went into a series of journals. Even my memories of what I was wearing on a given day went into my writing! And, over this period, my fog went away. It took years, but more and more I was able to live in the moment with my friends and family, rather than being stuck remembering pain from the past. School became less of a trial and more of a pleasure.

Now I am in classes at my dream university, and I love the life I have created. There are still days where I feel sad about what happened to me. I don’t think you should come out of cancer thinking that nothing’s ever going to bother you again, but I do know that over time, things get better. To every childhood cancer warrior out there, know that you are strong in your battle, happy times do come, and no matter what, every day you are winning your fight!

At the time of writing, Ella Jeffrey was a client in the POGO Transitions Program. With the support of her POGO Counsellor, Ella achieved her goals! (January 2023)

Last updated: June 2024

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by cjordan