When LLSC approached me to be the Honoured Hero for the 2017 Light the Night campaign in Calgary, I felt truly special, but I also knew I had to really think about it. And then I decided- I was ready.
I am ready to advocate for all those affected by blood cancers past, present and future. I am ready to share my story in hopes of informing and inspiring all of you to support Calgary’s Light the Night 2017 walk and LLSC. I am ready to contribute whatever I can to help find better treatments and cures for blood cancers, and I hope you are too!
It took me over three years to get comfortable with sharing my journey, but I am finally ready. Here it is…
It was around August long weekend of 2013 when I first started not feeling well. I was listless- tired with little energy. We had a party for my soccer team at my house but I just felt like curling up under a blanket and watching a movie. I just wasn’t feeling my usual self.
I was running a fever off and on, and would lie in bed with stomach pains. My parents asked me where it hurt and I told them I just kind of hurt all over. My parents took me to the doctor and after the doctor took a throat swab, it came back positive for strep. I was put on antibiotics and felt pretty good for a few days, but then after I finished the antibiotics, I felt poorly again.
Despite how I was feeling, I was excited to go to Provincial finals with my soccer team in Coaldale, near Lethbridge. While there, I was tired, couldn’t eat much and was nauseous. I thought I was still maybe feeling the after effects of the strep or was nervous- or both. I didn’t play the best that weekend but our team won silver anyway. I slept the whole way home.
When we returned to Calgary, my dad took me to the mall to look for new shoes- the new school year was just three weeks away. While there, I felt nauseous and so had to find a washroom. When I got out, my dad said to me, “You know what? You haven’t been feeling well for a while now. Let’s pop upstairs and see if the doctor can see you”. My doctor’s office is in the same mall, so I agreed. The doctor asked me lots of questions and gave my dad a blood requisition for me and told him if I didn’t feel better in two days, to get the bloodwork done.
When I didn’t feel any better, my parents took me to get the bloodwork done. I was not (and am not!) a big fan of getting needles; so it took a while but the nurse was very gentle and she got the sample.
Less than 12 hours later, I was diagnosed with Leukemia and had been admitted to the Alberta Children’s Hospital (ACH), where I stayed for the next ~6 months of my life. Talk about your life being turned upside down in the blink of an eye. It was crazy, and my life was forever changed. I didn’t fully understand until my primary doctor at the ACH said the word- cancer. My mind was spinning- I thought I had leukemia? Leukemia is cancer?! I was probably in shock- it all happened so fast.
From the time I started feeling “off” to the time I was admitted to the hospital was a whopping 19 days. Think about that. It hit me that quickly and was that aggressive.
My particular type of leukemia is not common in children and required intense, rapid and aggressive treatment. I was in the hospital for almost 6 months except for about a week after my first round of chemotherapy.
What a glorious week that was. It felt good to be home. I appreciated being home and just having some of my old normalcy back. Sometimes we take the simple normalcies of life for granted- going to hang out at the mall with friends, petting your dog, playing in a soccer tournament with teammates, sitting down to dinner with your family, even arguing with your siblings! I have learned to appreciate those little things.
Back to the treatment. Chemotherapy, radiation and ultimately, a blood and marrow transplant (BMT). I won’t go into the details too much but trust me, it’s not a pleasant experience. The stories you’ve heard or read before are all true. Nausea, lack of appetite, hair loss, being hooked up to tubes and machines 24/7 etc. etc.- I expected all that.
What I didn’t expect was the isolation. When you are so severely immuno-compromised, someone with the sniffles can give you a cold or flu that you can’t fight off.
I also didn’t expect the lack of privacy, the obsessive cleaning to keep everything in my room germ free, the seemingly constant intrusions by various doctors, nurses, residents, cleaning staff, my parents etc., the steady flow of dings and bells and noise, the inability to sleep for longer than an hour or two before being nudged awake for more meds, bloodwork or a dressing change. Like most teenagers, all I really wanted was to sleep in and sleep in peace. The disruptions made that pretty difficult. I didn’t expect the sleep deprivation on top of all the other stuff. I didn’t expect not having any independence or control. It was tough to deal with that.
I understand of course. All those things needed to happen for me to get well, but it wasn’t easy putting up with it all- but I’m not complaining! I had close friends visit and lots of people sent me kind, thoughtful gifts. I needed those interactions, that human contact to remind me how awesome all those little things are- friendship, fun, laughter.
The odd hours in the hospital turned me into a night owl. I remember one particular evening I had a conversation with my dad- it was probably 3AM and we had a wide ranging, emotional and philosophical discussion about many things that no 11-year old should have to contemplate. We were honest and frank with each other- we owed that to one another. I remember asking him, “Do you think all this I am going through will change me as a person?”. My dad responded that he didn’t see how it couldn’t change me because what we experience is so closely tied to who we are. I think I knew the answer before I asked the question.
No surprise ending here- it turns out that being diagnosed and treated for leukemia absolutely did change me. It has made me more grateful and appreciative for the simple joys of life- having fun with friends and family or a quiet night of Netflix-ing at home! It has given me perspective on life and made me want to do whatever I can do to make sure others diagnosed with blood cancers get to feel the same way.
This is how I knew that I was ready to be this year’s Honoured Hero. I am ready to share my story so I can pay it forward and do my part to help raise money through Light the Night 2017 to fund research into better treatments and cures for all blood cancers. I want to see a day when every blood cancer sufferer gets to feel the way I do today- Humble. Grateful. Appreciative. Alive.