I was 14 years old and halfway through my grade eight finals when I was diagnosed with high-risk leukemia. That was when my life changed forever. I went from being an annoying little teenager to a “mature” one in a matter of minutes. To be very honest, I don’t actually remember being diagnosed.…Sounds weird right? I know. It was like that for most of my treatment actually. I guess it’s my brain’s way of protecting me, which I am extremely grateful for. I have had to rely on the memory of my parents for some of this.
As you can imagine, the news was devastating. None of us knew what to do or what to think. We were told that my treatment plan would consist of two and a half years of chemotherapy. Going into treatment, I had a sense of how intense it can be from hearing about others or seeing cancer patients on TV, but truly having it was a completely different thing. It was more than I could have ever imagined. It rapidly became one of those things you can only know when you have it.
Mom and Dad stopped working straight away and decided it would be best to focus on the situation until I was stable and okay. My little sister Kya went to visit family in Winnipeg for a while.
I’m really happy she was away, because exactly one month after diagnosis, I ended up having a really rare side effect to the chemo. Paralysis. It is expected when on treatment to feel numbness or tingling in the limbs, but definitely not actual paralysis. It was getting harder and harder to move until one day I actually couldn’t move at all. It was like a wave. Starting with my toes, moving up to my ankles, then my knees, and my hips. I couldn’t even reposition myself on the couch. Because it was spreading so quickly, my oncologist told us to call an ambulance right away. I ended up spending a few nights in the ICU as a precaution. They were worried it would spread to my lungs, in which case I would need ventilators to breathe. Thankfully it stopped mid-stomach, so I didn’t need them after all.
After gaining my feeling back, I had lost nearly all of my muscle mass and literally couldn’t even move on my own. But this time, instead of not being able to move my legs, I couldn’t move anything. I had to be spoon fed—as a teenager! It was terrible. I was in so much pain in my muscles, my nerves, and especially my joints. Let me tell you, literally learning how to stand on my own again took six weeks of in-hospital rehab. Walking and getting upstairs took way longer and it was A struggle. The pain was excruciating, but I still pushed through and eventually was able to do those normal things again. It was a HUGE accomplishment.
Thankfully, I had Kids Cancer Care’s PEER exercise program a few times a week, which helped me TONS with my recovery. PEER is basically a personalised rehabilitation exercise and stretching program depending on what you need it for. PEER was developed by researchers at the University of Calgary and health care professionals at the Alberta Children’s Hospital. The goal of the program is to keep kids moving and make sure they don’t become too weak because of treatment. This is incredible and if you know anyone with cancer, you know that it is much needed! It’s basically fun physiotherapy. It helps reduce the immediate and long-term side effects of cancer treatments. And so, I participated a couple times a week and got better. I still participate in it today.
A couple months after that horrible time, I experienced yet again another rare side effect. Unfortunately, this was the one and only thing that I remember every moment of. Brain swelling is not fun at all. I couldn’t speak. I couldn’t move. I could barely breathe, and I was choking. They thought I was having a stroke. Not being able to control a single muscle in your body is terrifying. Not even being able to blink or breathe is something I was never prepared for. All I wanted to do was tell my parents I love them, because I thought I was dying, but I couldn’t say it.
Again, my body was all pain. Everything hurt so badly but there was no way for me to communicate that to anyone. I won’t talk too much about this experience because I really don’t feel like breaking down in front of everyone right now. It was honestly the most traumatising thing I have ever experienced, and it still gives me PTSD to this day. I don’t think I’ll ever get over it.
The last two and a half years haven’t been an easy road, lots of gravel, with occasional boulders if you know what I mean. So, as you can tell, treatment has been pretty rough. Thankfully I am now finished. (I finished in October!!). But I am now dealing with the long-term side effects. In my case, it is a severe case of avascular necrosis. Basically, this happens when there’s not enough blood flow in the bones. They deteriorate and die, which means I am the equivalent of a piece of glass right now. It causes a lot of pain, like, A LOT of pain, but I have had it for a couple of years and so I am kind of used to it. It does prevent me from doing some of the things I used to love, for example volleyball. Jumping is risky, dangerous, and extremely painful.
My takeaways from treatment are that when you have the opportunity to do something, go and do it before it’s too late, before you can’t anymore, because you never know when that will be. Being sick also taught me to live in the moment and to not take things for granted.
Like I said earlier, I only remember a handful of things that have happened throughout those two and a half years. What a lot of people don’t think about are the after-effects of treatment, when the hair grows back… I still have monthly visits to the hospital because of my bone condition, and so I’ve been hearing a lot of stories about what happened to me throughout my journey. Although my cancer treatment has ended, as I stand here before you today, my truth is that I am struggling mentally to process all that has happened…
Now, this is where Kids Cancer Care comes in… Throughout the entirety of my treatment they have been there for me and my family whether it was Pizza Night at the hospital, or some of their programs that they provide for kids and families. I have been part of so many of their programs, like PEER and Teen Leadership, both of which I am still in. The staff have been there for me the whole time and were a great support to my family.
One of my family’s favourite things is Camp Kindle. Since I was diagnosed, I have been isolating to prevent any sickness, and then Covid hit, so it just amplified the isolation. Our family isolated completely for two and half years, like we literally went nowhere, not even to the grocery store. Camp was the one and only place we felt safe and comfortable visiting, because we know Kids Cancer Care does not risk anything when it comes to the health and safety of the kids. We always look forward to the time we will spend there next and it has become one of my family’s happy places! It truly means more to us than we could ever tell.
As an older sister, I worry about my little sister Kya a lot. Having cancer and not being able to explain to her what is going on or trying to “be okay” to stay strong for her was extremely difficult. I was always in and out of the hospital, and sometimes she wasn’t allowed to come visit me. During the pandemic, Kids Cancer Care had little Zoom calls with princesses, or activities for her to do, which made me feel so much more comfortable being away from her. Knowing that she had fun and wasn’t worrying about me in that moment, most importantly, meant a lot to me. Kya is also part of the PEER exercise program because she does have a lot of pain and problems herself, and it’s also a great way for her to meet other cancer siblings her age.
Thanks to Kids Cancer Care, I have made so many new friends that truly understand me. I can tell others the crazy things I’ve been through, but they will never understand. It feels so amazing to be connected with others my age who I can have real conversations with, some of whom I’m sure we’ll be friends for a long time! Most of them I met through the Teen Leadership Program which is a program directed for older teens to learn leadership and life skills. One example would be learning how to apply for university and all the tools and tricks we’ll need to know when the time comes. We also organise and participate in fundraising events and volunteer at local non-profit organisations. It’s a lot of fun!
Another thing Kids Cancer Care has provided is a tutor… Treatment causes this thing called “brain fog”. It slows down your thought process and makes it difficult to remember things. I was majorly affected in this area, as I wasn’t able to fully comprehend the school material. I have had my tutor for a year, and we actually became friends. I think of her as a friend that is just helping me out, because again we really understand each other in ways not many people can (because she too had childhood cancer). Fun fact! She was also a spokeskid for Kids Cancer Care at one point. It’s nice because we share a lot of the same interests as well!
One day I hope to become an optometrist, I just love everything about optometry, and since it is a very pricey schooling program, I will definitely be applying for the Kids Cancer Care scholarship!
Of course, all that happened absolutely sucked. The uncertainty of what the next day, of what the next hour, would hold for me was absolutely terrifying. With that being said, it’s nothing like it would have been without the support that Kids Cancer Care has provided for me and my family…the support, the fun, and most importantly the distractions. I honestly cannot imagine what these past two and a half years would have looked like without them.
Honestly this, this right here, me writing this for you, is an opportunity that I will forever be grateful for.
Thank you so much for reading my story, and for your time. Thank you for supporting Kids Cancer Care.
~ Mikah, Kids Cancer Care spokeskid, cancer survivor, future optometrist and superhero
