“When I was three, my dad took me to the doctor after I had been complaining about a sore knee for about four months. My parents thought it was just a soccer injury, so they didn’t take me in to get it checked out right away. Of course, even if it was just a soccer injury, it probably wouldn’t have hurt to take me in anyways. But no, it was not a soccer injury, it was not a hockey injury, it was something worse. Way worse.”
Note to Readers: This piece is a tribute to my younger brother Thomas, who sadly passed away at the age of seven in the year 2011 due to neuroblastoma cancer.
I am Thomas. I have been in New York for two years now. I moved when I was ten, and now I’m eleven. Along with myself, my sister, mom, and dad came to New York. My sister’s name is Anna. She is thirteen. My mom is Dianne, and my dad is Phil. We moved from Canada. Yeah, that’s right. You know, that country with all the bears and beavers? Nice country, eh? I’m sure you’re wondering if I like to play hockey? Well, of course I do! I’m a better goalie than Carey Price!
I’ve always been the oldest guy on my teams, and I’m about a foot taller than everybody else. I feel like a giant. Why am I on these teams if I am better than Carey Price? It’s because of all the time I spent in the hospital back in Canada. And, maybe I’m not quite that good! But eventually, I will be. You see, I missed tons of school and most of my hockey practices. Actually, I missed out on the five years of my life when I was sick. It was all thanks to a stupid six-letter word: cancer.
When I was three, my dad took me to the doctor after I had been complaining about a sore knee for about four months. My parents thought it was just a soccer injury, so they didn’t take me in to get it checked out right away. Of course, even if it was just a soccer injury, it probably wouldn’t have hurt to take me in anyways. But no, it was not a soccer injury, it was not a hockey injury, it was something worse. Way worse. I was diagnosed with stage four neuroblastoma cancer. What that is, I can not say, I barely understand it myself. All I know is that it’s extremely rare, especially in children. I was confused. All of a sudden, I’d be going into the hospital all the time, and people would treat me way differently. I fought this cancer for two years. I practically lived in the hospital. It was my second home. I didn’t like it there. I knew I would have to get a couple shots or a scan that involved a giant machine that beeped like crazy every time I went in. But I got used to it after a while.
It’s always been irritating how everyone who knows me and my story treats me differently than they would others. I’m fine now, and yet I’m still being taken care of by everyone. That was one thing I was so excited about when I heard we were moving to New York. I knew it was going to be very difficult, and it would take some getting used to, but there were many things I was looking forward to. One of those things was meeting new people. I had always heard that New Yorkers were very passive aggressive. I soon learned that I was blinded by my very Canadian lifestyle. If someone bumps into you accidentally in the streets where I lived, you would soon be bombarded with thousands of sorries. That’s right, I said so-rry.
My sister would always make fun of me when we had to get flu shots in the fall. I would sit down and watch the nurse slowly put the needle in my arm. I would be smiling, completely calm. My uncle fainted every time he got a shot. Lots of people thought I was brave for being able to sit there and be fine with everything. But I had no choice. I knew there would be lots more to come.
The first bunch of blood tests I got really freaked me out. Who actually likes getting shots or their blood drawn? I mean, I don’t particularly like them, but when I had to go to the hospital at least once a week to get shots, I had to become okay with them. But not everything. Some things are just plain weird! Once, they had to put this weird tube inside my chest that would be hooked up to a machine so that it would be easier to get the medicine inside of me. It is called a “broviac.” I don’t really remember when I got it, which is probably a good thing. The important thing is that it was going to help me and help the doctors. And it did. It made it so much easier when I had to sit still, for what felt like forever, and have to be attached to a pole with bags of medicine hanging from it. Basically, if I wanted to go anywhere, I would have to carry this huge pole around with me.
This medicine is quite a common one. It’s called “chemo,” or “chemotherapy.” I have to say, after all I’ve been through, having to be put on chemo was one of the worst things. It makes you feel horrible. I would get so nauseous and tired. It makes you feel like you have the flu, but it never goes away. And the worst thing about it is that it causes hair loss. Every time I was put on chemo, my hair would fall out again. There was one point where I was so upset about having no hair upon my head, that my dad shaved his head to support me and show empathy. It made me feel happy that he was trying to let me know that I was not alone. But I still hated it. I became the king of hats. I had about thirty different toques.
At my school, I’d be the only one who was allowed to be wearing one. I was getting tired of people always telling me to take my hat off before the teacher saw, or something else indicating that they didn’t know about my situation. After a year or two of this, my mom decided that it might be a good idea to talk to the school and see if they could change the dress code. It was great because I was now not the only kid in the school wearing a hat!
We lived in Calgary, which is a fairly good sized city. When I say that, I mean that it was big, but not too big. It was small, but not too small. In our neighborhood, most people knew each other. My school was a public school, so in order to get in, you had to live in the district of the school. So mostly everyone at the school lived in the same neighborhood. I would see my friends on my way to school. After all, it was only two blocks away! Sometimes, I would walk to school with my friends who lived on the same street as me. “18A Street” was its name. It’s a cul de sac right in between 18th and 19th. The school was on 18th street, so seriously, it was super close.
I had a couple friends who lived on my street. Sam, Alex, Kyra, and Isabel. They were better friends with my sister, though. Sometimes in the evening after we’d eaten, my sister and I would go play outside with them. Sometimes, even Ian and Grant came out! We would run in the middle of the roads and play hockey. So much hockey. Sometimes, when it was just Alex and me, we would run around chasing each other and coming up with silly names to yell. I called him “Chicken.” I don’t even know why. One day, I just said “Hey, Chicken,” and it stuck. He called me “Donkey.” Again, no idea where that came from.
With all my visits to the hospital, I fell out of the loop at school. I was sad because I felt left out, even though people tried to include me. I was barely able to read, and my printing was almost impossible to understand. I still spoke like a toddler. All of my teachers were really good and supportive. They helped me get caught up. It just drove me crazy sometimes. My friends would all be talking about Benjamin’s sick birthday party on Saturday, that I missed thanks to an appointment where I had to lie in this futuristic-looking machine that took a bunch of x-rays and photos. Oh! I almost forgot! I also got seven shots in my right arm. Ah, cancer is stupid!
Speaking of cancer being stupid, there was an incident with some of my friends that was really annoying. It was after school had ended one day. My friends and I were playing tag on the playground and the field. Actually, to this day, I don’t know what the game was. It was like a strange mix of tag, dodgeball crossed with a snowball fight, and European handball. I’m not exactly sure why, but my friend threw a chunk of ice at my face. Maybe he was more interested in having a snowball fight. But I’m telling you, this wasn’t snow. It was like a full-on piece of ice. And it had rocks in it. My parents had to take me to the hospital. It hit me right under my eye. He flung it towards me as if throwing a frisbee, double the force. The chemo I was on was making it very dangerous for me to do anything that could get me hurt. If I got a cut, and I was bleeding, I would have to go to the hospital right away. It’s because I had low platelet levels. Platelets are basically the red and white blood cells that require bone marrow to develop. If someone has low platelet levels, and they get a cut, it will bleed, and bleed, and bleed. You can actually die from this, so my parents were always making sure that I wasn’t playing any games that involved throwing knives, or anything of that sort. Basically, just anything that could get me injured, or even sick. Being on the chemo and developing low platelet levels made any small, mild cold, a deadly one. Chemotherapy is one of the many treatments that affect bone marrow and platelet counts. We actually had to cancel a trip to Hawaii because the doctors said it would be dangerous for me to be in an active environment. Usually in Hawaii, we just relax. Well, my parents do. My sister and I, we go swimming all day and play games with other kids we meet.
I’ve always loved our trips to Hawaii. I can tell that my sister and parents do too. Since it’s about a seven hour flight to Maui, we don’t go very often. And by not very often, I mean that we go once a year. But, because of that, we get to stay for around three or four weeks. My sister tells me that she feels like our trips to Hawaii are her favourite things to do! Our upcoming trip will be even better! It turns out we will be going at the same time that one of my best friends back at home will be there with his family.
I am also looking forward to our trip to Palm Springs. We bought a house there recently. It’s huge. It’s bigger than our place back in Canada! That place was four thousand square feet. I loved that house. Before we moved and put our house on the market, my parents let my sister and me throw a party for all of our friends and family. I wish it would have been in the summer, though. We had a particularly nice and big backyard. It had a hot tub in it. We had a lot of fun hanging out in that backyard. Let me remind you, typical summer weather in Calgary is not very warm. Maybe 28 degrees celsius as an average daily temperature. 30 if we were lucky. Also, Calgary summers tend to be quite rainy. In the evenings of most summer days, we would get a quick thunderstorm. But anyways, back to the party.
We decided that we would have our party mainly in the basement. Our basement was a nice size. We had a great entertainment area there. There was a bar, a pool table, and a bunch of signed hockey jerseys hanging on the walls. If you walked past this, you would reach the movie theatre. No, there was not an actual theatre in our basement! But it was a huge TV. About eight feet tall, twelve feet wide. Actually, it was one of those projector ones. We had a separate room with about seven different systems for the TV. My parents would hate it if anyone went in there! But for the party, we thought we’d just order some pizza and put on a movie. Something relaxing and fun.
I wish I hadn’t remembered so clearly everything that happened. So many different medications and gross treatments. My doctors had me take this medicine that my parents would put in this weird, vial-type thing. They’d have to squirt it into my mouth. Now, let just make this clear, the stuff was revolting. I knew I had to take it, I knew it would help me, but that didn’t make me any more eager. Everyday at four, my parents would sit me down at the counter. In front of me, they would place my iPad. While my dad filled the tube with the medicine, my mom put my favourite show on. I was quite tired of it, considering how much time I spent watching it. Okay, now you’re probably wondering what it was that I could watch no matter how many times I’d seen each episode. Alright, I’ll tell you: I loved to watch Spongebob Squarepants. I actually think that the show is ridiculous and idiotic, but I find it very entertaining. It makes me laugh and makes me feel happy. So there I’d be, watching Spongebob with both of my parents standing beside me. My mom would take the tube full of cream-colored medicine and tell me to open my mouth. I’d do as told, and she would place it at the corner of my mouth. Then, she would insert the medicine into me. Every time I had to take it, I would have to resist throwing up. A couple times, probably the first few times I had to take it, I couldn’t take the horrible taste and texture. I wasn’t used to it. I had trouble swallowing it. I’d end up throwing up all over the place, forcing my parents to rush around cleaning up after me.
Unfortunately, there were many things throughout my experience of being a cancer patient that caused me to throw up. My sister often witnessed this. When she was old enough to understand what was going on with me and why I was throwing up, she developed a fear of throw up. It sounds a bit silly, I know. But it is a real fear, and I’m not one to judge. Any time we are watching a movie involving someone puking all over the stage while performing, or something of that sort, I have to warn her. She’ll close her eyes tightly and cover her ears. I feel bad because if it weren’t for me, she may not have developed this irrational fear. But honestly, if I apologized to her for that, she’d probably hit me over the head with a hockey stick.
Also, I would like to explain a bit about my diagnosis of stage four cancer. There are five stages of cancer. Stage 0 is when the cancer is in place, but hasn’t spread to nearby tissue. If one is diagnosed with stage 0 cancer, there is a good chance it is curable. Then, there is stage I, when there is a small cancer or tumor, but it has yet to spread to nearby tissue or to the lymph nodes. This stage is often called early-stage cancer. Then, there is stage II and III, which indicate that the cancer or tumor is larger and has spread to nearby tissue and lymph nodes, but not the rest of the body. Finally, there is stage IV, which is when the cancer has spread to the other parts of the body. This is the worst stage of cancer. And I was diagnosed with it. I was immediately one of the top priorities at the children’s hospital.
I remember one of the first things I had to get done after I got my broviac. It was horrible. I was on chemo, so I already felt like I had the flu. I was nauseous and exhausted. And then, I had to go in for a cat scan. Over time, my parents and I decided to call it “the doughnut,” which made it a little bit easier to talk about, I guess. Or maybe that’s just what they thought. Anyways, I had to go and lie on this table thing. Then, they would put this weird, blue dye-type medicine stuff in through my broviac. I’m not sure what it was, but what I do know is that it makes it easy to see the cancer. Actually, I don’t really have much of a clue about its purpose, but I knew that it was necessary and important. But it made me feel even worse afterwards. Often, the doctors would have my parents take me to Dairy Queen because they knew that was one of the most unpleasant procedures I would get on a regular basis.
Sometimes, I had to get blood transfusions. I hated those too. Basically, I would have to sit in the small hospital room with this giant machine right beside me. Honestly, it wasn’t that bad, and it wasn’t painful. It was just annoying and extremely boring. I literally couldn’t move. I had to lie there in a very uncomfortable bed and not move. And, after a little bit, the room started to smell horrible. You couldn’t escape the smell. My dad would always have to be there so he would sit in a chair, awkwardly watching. He always brought in a bunch of oranges that he would peel in the corner of the room. The orange peels would make the room smell a little bit better, but not much.
Like I said earlier, I was diagnosed at the age of three. It was in my knee. I fought the cancer for two years until I was five. By then, it had gone away. I was cancer-free. I was so happy. Though I was young and didn’t understand much of what was going on, I knew it was a good thing. About a month later, my parents sat me down at our family dinner. Everyone was there. My family living in Medicine Hat even drove up to see us. After we had eaten, my mom made the announcement. She said that I was sick again. The cancer was back. At that time, I could tell what everyone was thinking, because I was thinking the same thing. Was it ever gone? Why did it come back? Will it ever go away?
This time, when I was diagnosed, the tumor was found behind my left eye. It looked like I got punched in the face, for real. Actually, that’s what I told all of my friends. At first, they thought it was kind of cool — as first graders, it would make sense. But after having a black eye for over two weeks, people started to doubt that that’s what had happened. Eventually, I had to tell everyone the truth. Then, I was treated the same as I was before. People treated me as if I was unable to do things. Things that I could do completely fine. The cancer was stage IV, so it wasn’t any better in that sense.
Sometimes, I think about what it would be like if I hadn’t survived. My family would be devastated. Well, at least I hope they would! Whoops, I probably shouldn’t joke about this. I knew there was a possibility that I wouldn’t survive, but I tried to keep hope. I knew that hope was key for someone like me. But I also know that if I hadn’t survived, it would have been all over the news. Maybe not everywhere, but definitely Calgary and maybe some smaller towns nearby. That’s because it’s quite rare for young children to die of cancer. Especially since this type of cancer is extremely rare for children, and adults too, for that matter.
But all of these weird procedures and being on chemotherapy, well, they worked! I survived. I surprised so many people. The doctors, my friends, my family, everyone who knew me, actually. But most importantly, I surprised myself. I didn’t know what was going to happen. No one ever talked to me about the bad stuff. Only the good. I guess they thought they would be helping me in some way, I’m not sure. But that just left me curious. Some things I picked up from everyone being around me. When I was doing better, people would act completely different than when I was not. I could tell when something was up. My parents told me that even the doctors didn’t think I’d exceed two years. I knew I had to stay strong. I was quite young when I went through all of this, so a lot of things related to my illness were very confusing to me. I had no idea what half of the procedures actually were! I was told they were necessary and they would help, so I went with them. And in the long run, it was totally worth going through it all.
Now is the fun part. Now, I get to move on with my life. I get the chance to restart. Nobody knows my story, unless they work for my mother, who by the way, is pretty cool. She’s a CEO of this awesome digital marketing agency called “Critical Mass.” Her office is pretty cool, too. And, because of her job, my sister and I were able to get into an amazing school in Greenwich Village. It’s called “LREI.” “LR” for “Little Red School House” and “EI” for “Elisabeth Irwin High School.” It’s a private school, and it’s very progressive. I like it. I think my sister does, too. But it stresses her out a lot. She gets like three hours of homework each night. She tells me that her old school in Canada gave, like, no homework at all. She understands that going to this school is going to make it easier for her to get into a good college or university, but school is definitely not her favorite thing right now. I think it’s fun. But if I could change something about it, I’d add a hockey team.
I’ve made a lot of great friends, and I’m happier now that we’re here. They all know about my struggles in the past, but nobody really makes a big deal about it anymore. My sister told her class one day, and the next day, the entire school knew about it. Apparently, the teachers are a bit gossipy. But they’re all so nice. Overall, my life is so much better now that we’re in New York. I got to take my sick life and put it behind me. I even talked to my family about not speaking about it and treating me like it never happened. They understood. We all moved on together.