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Steve Hopkin and Shannon holding a white dog outside in front of a sunny wooded area.
Acute myeloid leukemia

Stephen Hopkins

Acute myeloid leukemia

Toronto ON
Canada

The old adage ‘while you are cancer-free, you are never truly free of cancer’ is especially true for caregivers. The brutality of watching your person suffer makes one hypervigilant and it can be difficult to let go of that…that can overshadow what you’re fighting for in the first place: the moments to cherish
Stephen Hopkins (shown here with wife Shannon and their dog Merton)

Life is full of unexpected moments that have the power to change our lives forever. Whether it is a chance encounter, a spontaneous decision, or an unforeseen event, these moments have the power to change our perspectives and challenge our beliefs. They shape our futures in ways we could have never imagined, and sometimes in ways we are completely unprepared for.

On July 30th, 2018, at 7:35pm (she was 5 minutes late), I met Shannon, the person who would change my life forever. So unexpectedly impactful was that meeting that I informed the Uber driver on my way home that I had just met the girl I was going to marry. Two years prior to meeting Shannon, I had experienced another of those unexpected moments. Just as I was beginning my career as a lawyer, I was in a major car accident. That accident wrecked my legal career and left me with difficulties I experience to this day, difficulties that make even writing something such as this story quite challenging.

In many ways, when I met Shannon, I was just surviving. Despite my challenges, Shannon really helped me to start living again. This story is also an example of how her courage and perseverance continues to inspire me today.

On June 10, 2019, at 9:30 AM Shannon received a phone call that a routine blood test had produced irregular results. In less than two weeks she was diagnosed with acute myeloid leukemia (AML) and admitted to Princess Margaret Cancer Centre in Toronto. It was completely devastating. Absolutely nothing could have prepared us for the journey we were about to embark on, and to describe the speed at which this was happening as "overwhelming," would have been an epic understatement.

Personally, I could not make sense of the fact that I met my soulmate one year ago and now I was potentially going to lose her. It was brutally devastating in every way. The only thing we knew for certain was that we were going to do this together.

On July 6, 2019, just days before Shannon began treatment, we were married. With less than a week of preparation, and my dad officiating, we had the most beautiful ceremony surrounded by a small group of family and friends on our condominium terrace. It is hard to explain how within the midst of crushing fear and sadness, I experienced the happiest day of my life. Despite it feeling like life was burning down around us, we were together, and that was all that mattered. These two themes: hope and positive moments together in the face of difficulty and uncertainty are what I want to focus on.

Admittedly, there is no way to describe the diagnosis and subsequent treatment of AML, which for Shannon included a stem cell (bone marrow) transplant, as anything less than horrific. It is both physically and emotionally devastating. For me, at the heart of the emotional onslaught was the uncertainty and lack of control. It was utterly excruciating to watch the most important person in my life suffer without any real ability to change the circumstances.

My own health issues notwithstanding, it was grueling. Each day attempting a brave face and a positive exterior, when beneath it all you are struggling and terrified was exhausting. Every single night after I left the hospital, I would sit in the hospital parking lot and sob, just broken, wondering how I would summon the strength for the next day. We are incredibly lucky that we have an extremely caring and helpful support system, which certainly does help, but in those moments, the only thing you want is some way to know everything is going to be ok.

But somehow I did find the strength, and I believe that is in no small part because of our love for each other. No matter what, we wouldn’t give up on each other. For me, striving to find some way to control anything in a process where you have no control, was a way to cope and made me feel like I was at least giving it my best to be part of the solution. Despite the best of intentions, it is easy to get caught up in what you feel you ‘need’ to do. I tried to know as much as I could and protect her as much as I could. Anything I did, I needed to do "as much as I possibly could." However, it never feels like it is enough.

It is impossible not to be fearful of the unknown in a situation such as this. There can be so many different outcomes and possibilities. Our minds want to jump to the worst-case scenario, so I tried to do whatever I could (my sincerest apologies to the staff who had to listen to and attempt to answer my three million daily questions) to "control," to avoid that outcome. But when you are just trying to survive the moment, sometimes you forget there are also a lot of very great outcomes and possibilities. While hard, its vital not to lose sight of what is important while trying to protect what you love the most. And while it is hard, it is important to try (I know, it’s hard, really hard…) to choose gratitude for the moment and "be present," instead of just trying to "do" everything. And it’s important to choose hope. It’s very conflicting (yes, I struggled with a TON of guilt) to try and be happy and positive in the circumstance, but I truly believe that this makes a difference.

While I obviously wish the circumstances had been different, I will always be extremely grateful for the time we spent together. We spent nearly every waking moment together for a year. And in those moments, nothing else mattered. It was just us. And I truly believe that the positive moments (from working on a puzzle to the staff of the Princess Margaret Hospital helping me surprise Shannon with a recreation of our first date on the 16th Floor outdoor garden) were helpful reminders during the darker moments as to what we were fighting for. While the circumstances were awful, I can’t imagine a more solid bond forged, one forged through pain and fear but also through hope and love. Shannon’s insistence that we could get through anything together was in no small part the strength I didn’t know that I could find, and I’m eternally grateful for that.

In closing, I truly hope my story can provide two things. First, I would like to reassure those that are currently in the position I was in that your effort DOES make a difference, and despite feeling otherwise, it IS enough. Short of curing the person yourself, you will always feel like you need to do that one extra thing. It is the love that foundation, that desire to "do anything" that is truly important.

Most importantly, I want you to know there IS hope. On November 6th, 2023, my real-life superhero celebrated her "4th birthday" since her stem cell transplant, and she is living, breathing (and THRIVING!!) evidence of that hope.

It is important to cherish the moments that you have instead of fearing the loss of moments yet to come. So, I hope that you allow those moments to anchor you, to be a lighthouse beacon in stormy times of what is important and to allow those moments to inspire you to be better or do better today than you did yesterday. All I wanted to know when Shannon was diagnosed was that we had hope. I know it is not easy, but I truly believe it is worth it.