Content warning: this piece contains death, illness, and graphic descriptions of medical procedures.
When people find out I had cancer, they usually look at me with pity and say something along the lines of, “I’m sorry, that must have been horrible.” Awkward silence usually follows because I don’t know how to respond.
I was diagnosed with cancer when I was two and a half years old, and since I was so young, I don’t remember much. I do remember hiding under my dining room table because I didn’t want to take my chemotherapy drugs. I remember my uncle playing peek-a-boo with me through my hospital room door. I still can’t stand peppermint. It reminds me of prednisone, a steroid I took during my treatments.
My mom, Shirley, kept a journal during my treatments in a purple Tarzan notebook, which lets me look back and read about this significant time in my life I have little memory of. It’s interesting to read not only what I went through, but also what my parents went through.
My experience is only one version of childhood cancer. According to the Canadian Cancer Society, approximately 943 children are diagnosed with cancer in Canada each year.
Those 943 children each have a story. The stories you’re about to read will show you how four families were affected by childhood cancer.
October 10, 1999
“This morning we got the worst news of our lives. We were totally in shock and devastated. Our worst nightmare was coming to life, it was awful.” -Shirley
The week leading up to October 10, 1999, I wasn’t my energetic, two-and-a-half-year-old self. I was tired, my appetite had changed, and I didn’t want to do anything except watch movies. My parents thought I had the flu, but when I didn’t return to my normal self after a few days, they took me to the hospital. I had some blood work done, was sent home for the night, and my parents were told to bring my urine sample back the next day.
In the morning, the hospital phoned and told my parents to bring me back. There, my parents heard the words no parent ever wants to hear: Your daughter has cancer. I was diagnosed with acute lymphoblastic leukemia on Thanksgiving Day. Needless to say, my parents weren’t feeling very thankful.
Now, 20 years later, we have a Thanksgiving tradition of thinking about my cancer diagnosis all those years ago and naming what we’re thankful for.
I’m thankful for my health and the amazing team of doctors who took care of me.
I’m thankful for my parents, whose lives revolved around making sure I got better. I’m thankful for my mom, who put her life on hold to be with me at the hospital, and for my dad, who juggled working with spending as much time at the hospital as he could. He would visit in the morning before work, and come back as soon as his workday ended, spending the rest of the night with us before going home to sleep and doing it again the next day.
Seven years ago, my dad got a tattoo in honour of me: Bear from Bear in the Big Blue House (a show I watched consistently when I was going through treatment) surrounded by a gold ribbon to represent childhood cancer. I cried when he came home with it. It reminded me how exhausting and traumatizing that year and a half of treatments must have been for my parents, and how much it still affects them today.
I’m thankful for my grandmas, who supported my parents and me. One of them would visit the hospital during the day and bring my mom lunch, and the other would visit in the evening and bring both of my parents supper. At least one of them would join my mom and me at appointments when my dad was working.
I’m also thankful for the people I’ve met because of cancer. I met a girl named Caitlyn at a weekend retreat for families who have been affected by childhood cancer. Caitlyn and I were both going through treatment at the same time, and 20 years later, we’re still best friends.
October 22, 1999
“She was very upset, scared and out of it. She was in lots of pain all evening, it was very hard to see her like that.” -Shirley
Almost two weeks after I was diagnosed, I went for my first surgery: a bone marrow aspiration and lumbar puncture (also known as a spinal tap) and a port-a-cath insertion. In the bone marrow and lumbar puncture, the doctors inserted a two and a half inch-long needle into my back to get bone marrow and fluid surrounding my spinal cord for testing. They placed a port-a-cath under my skin so the doctors could draw blood and give me medication.
I would be conscious for many other lumbar punctures during my treatments, and for each one, I would have to be restrained because I would freak out and flail my body to try to escape. Being restrained made it even more terrifying for me, and as a result, more upsetting for my parents, who had to watch me go through it.
November 20, 1999
“The doctor said she must be some kind of miracle healer.” -Shirley
Almost a month after my port-a-cath was inserted, it became red and started to leak pus. My parents took me to the emergency room, and the doctors told them not to worry about it and sent us home. Less than a week after the first visit, my parents took me back to the emergency room because the incision was one big hole. Because there was still pus coming out, the doctors didn’t want to close it up. They hoped it would close up on its own. It eventually started to heal, and the doctor said I was a miracle healer.
January 1, 2000
“Happy New Year! We are starting our new year in the hospital, but whatever it takes to make Sarah feel and be better. Let’s hope the new year brings us nothing but good news and great health for Sarah!” -Shirley
The doctor spoke too soon. On December 30, 1999, the area around my port-a-cath was red and swollen again. With a fever of 38.1 degrees Celsius, I was admitted to the hospital, and I spent the last day of the millennium getting my port-a-cath taken out. My parents and grandmas celebrated New Year’s Eve with Gondola Pizza (I had perogies and broccoli, one of my favourite meals) and we watched the fireworks at The Forks through my hospital room window.
March 1, 2000
“Well, the inevitable started to happen. Sarah’s hair started to come out. Even though we knew it was going to happen, it was still very hard and devastating to see.” -Shirley
March 5, 2000
“As of today, Sarah has no hair left. Only a bit of fuzz, she looks like she did when she was a baby. She’s still cute as a button!” -Shirley
The first week of March was one of the most difficult times during my treatment. My hair fell out, and all I wanted to do was watch TV and sleep. Oh, and eat. Prednisone cravings are no joke. All I wanted to eat was Campbell’s vegetable soup, chips, and broccoli. My parents would wake me up in the morning and the first thing I would say when I opened my eyes was “Soup?” “Chips?” “Broccoli?”.
The treatments children with cancer receive are intense. Not only do they cause psychological side effects such as cravings and mood swings, but children also suffer from many physical side effects.
According to the Canadian Cancer Society, about two-thirds of childhood cancer survivors will experience side effects from their treatment. These can include vision, heart, and developmental problems, hearing loss, and even other cancers.
Ross Turbovsky, a leukemia survivor, experienced terrible side effects like seizures and sores on his gastrointestinal tract during his treatment.
Ross’s Story
“Everything is more valuable.” -Ross Turbovsky
When Ross Turbovsky, now 18, got a large bruise after a small needle, started feeling light-headed, and became easily fatigued, his mom Teri thought he was anemic.
She took Ross, who was in grade nine at the time, to the hospital, where he was diagnosed with acute lymphoblastic leukemia. Ross spent the next three and a half years in treatment.
Ross and Teri said they found humour in a lot of things during those three and a half years, like when a nurse told Teri one of Ross’s chemotherapy drugs was getting him high.
“I think that’s how you have to do it,” Teri said. “You can’t think of the what-ifs too much, or you’ll go insane.”
It wasn’t always easy to stay positive, though. During treatment, Ross got sores down his gastrointestinal tract, which led to a blood infection.
“That was the worst; it was awful,” Ross said. “I couldn’t eat. Morphine was my friend.”
Methotrexate, a chemotherapy drug, gave Ross a seizure. According to The Leukemia and Lymphoma Society, methotrexate is used to treat acute lymphoblastic leukemia that has spread to the central nervous system or to prevent it from spreading to the central nervous system. Other side effects include black, tarry stools; bloody vomit; blurred vision; shortness of breath; or mouth sores.
A girl Ross knew through Facebook who also had cancer passed away because of methotrexate.
“The treatments they give these kids, they’re 50 years old,” Teri said. “The fact only four per cent of all cancer research funds in Canada goes to childhood cancer research is awful. They need better treatments and more awareness.”
Ross said a lot of his friends didn’t know September is Childhood Cancer Awareness Month. “Everybody knows October is for breast cancer, but you never hear about kids.”
Since his cancer diagnosis, Ross doesn’t take anything for granted.
“Before I didn’t question much, but now that I know what life can be like, it’s changed my outlook on everything. Everything is more valuable.”
Teri agrees that her mentality has changed. “We looked death in the eye, so now I baby him, maybe a little too much.”
Ross is now 18 years old and starting to think about his future. Right now, he wants to go into culinary arts, but Teri thinks he should work with children because while he was going through treatment, Ross would talk to other kids to help them feel better, even if he preferred not talking about what he was going through.
“I find it helps them more than me,” Ross said. “They see me as an older kid, so they might think ‘If he can do it, I can do it.’ I like helping keep their spirits up.”
. . .
I also had conflicting feelings about talking about my cancer. For a lot of my childhood, I didn’t really understand what having cancer meant. I knew I went to the doctor’s once a year for follow-up appointments, I knew I had a scar on my chest from my port-a-cath that I hated. I would keep it covered at all times, and if somebody happened to see it and asked what it was from, I wouldn’t tell them.
As I got older and started to understand what I went through, I became more comfortable talking about it. Now, I’m proud to talk about my experience.
February 25, 2000
“Sarah was great at the clinic today, she didn’t cry at all. She was very brave during her needle. When the nurse did her IV, Sarah sat on my lap and blew a party horn, she didn’t even say ‘ouch’ when the needle went in. When the nurse was leaving, Sarah said ‘Thanks for poking me.’ She is the sweetest little girl around. I was so proud of her, it brought tears to my eyes. I wish that I could be as brave as she is!” -Shirley
Like Ross and Teri, staying positive and finding little things to laugh at and celebrate helped my parents through my treatments.
The same can be said about Carolyn Kooymans and her husband Joshua. Instead of seeing their experience with cancer as a terrible thing, they’ve chosen to see it as something positive.
Malcolm’s Story
“We weren’t sure whether our child was going to live or die.” -Carolyn Kooymans
When Carolyn Kooymans and Joshua Robertson’s four-month-old son Malcolm was frequently tired and throwing up, Carolyn didn’t think much of it. Everyone she mentioned it to said it was normal for a baby. But when Malcolm started waking up every hour screaming and pulling his ears, they took him to the doctor, where he was diagnosed with an ear infection and sent home with antibiotics. They went back to the doctor multiple times in the next weeks because the antibiotics weren’t working. Eventually, a doctor who had seen Malcolm a couple of weeks prior said something didn’t seem right.
The doctor did some tests, which showed Malcolm’s blood counts were off. Carolyn, Joshua, and Malcolm were put on a flight that night from Churchill, where they were living at the time, to Winnipeg to rule out some things the doctors thought it could be.
“I remember them saying in the worst-case scenario it could be leukemia, but they said, ‘We won’t go there yet,’” Carolyn said.
Carolyn, Joshua, and Malcolm arrived at the hospital at 11:00 p.m. on Saturday, and by 2:00 a.m. on Sunday, January 28, 2019, Malcolm was diagnosed with acute myeloid leukemia.
“A lot was going on that night — we didn’t sleep at all,” Carolyn said. “It was test after test after poke after poke.”
Carolyn said the first day after Malcolm was diagnosed will stick with her.
“It was terrifying. Those first 24 hours when we were talking to the staff, everyone was talking to us in a sad tone. We weren’t sure whether our child was going to live or die.”
Malcolm started chemotherapy that Monday, and within a few days Carolyn and Joshua noticed a difference in him.
“It was amazing to see what they were doing was working and was finally showing us that all the worries we had as parents were legitimate,” Carolyn said. “I think it took a few days and then we finally saw him smile again, which we hadn’t seen him do in a few weeks.”
Malcolm would receive eight months of intense chemotherapy, and since he was a baby, he had to stay in the hospital for most of that time. His immune system was compromised, so he couldn’t be let out of the hospital until it built up again after each treatment, which would take about a month.
Since they were living in Churchill when Malcolm was diagnosed, the family stayed at Ronald McDonald House Manitoba for four months. Eventually, they bought a house in Winnipeg, and in April Joshua went back to Churchill to sell their house. Carolyn still hasn’t been back.
Since Malcolm’s diagnosis, they have learned to appreciate the little things.
“Things like going for walks mean so much more now because we weren’t able to for so long,” Carolyn said. “It’s been a challenge, but also something that’s given our life purpose, as opposed to something that’s screwed it up.”
This new perspective isn’t always easy, though.
“It’s changed the way we parent. Now we worry more about him than we would have, and little things like him getting a cold send you completely off. ‘Do we have to bring him to the hospital? Is the leukemia back?’ You have those moments of fear, so it’s not all great.”
. . .
I think this is something that stays with childhood cancer survivors and their families. No matter how much time passes since I finished my treatments, whenever I’m sick, tired, or have a headache, there’s always a little voice in the back of my head that wonders if it’s cancer.
February 18, 2000
“I had a very hard time today at the clinic. Very emotional, everything seemed to be upsetting me. I couldn’t keep it together, I feel so helpless when Sarah is calling out my name. Sorry sweetie, someday you’ll understand that this was all done to help you!” -Shirley
This entry makes me cry when I read it. I’m so thankful that if I had to have cancer, I had it when I was so young, so I don’t remember anything. I can’t imagine how difficult it must be to be a parent whose child has cancer, especially when their child is too young to understand what’s happening.
April 18, 2000
“Today was a very hard day at the clinic, a 10-year-old boy passed away. It felt very shocking and hard to handle. This was the first death that we’ve heard of since this all started. I was convinced that every child that had treatments was going to be okay. Boy, did I have a rude awakening.” -Shirley
It’s difficult to think about anyone dying from cancer, but it can be even more difficult to think about a child dying from it. But avoiding it doesn’t change the fact that children do die from cancer.
According to the Canadian Cancer Society, childhood cancer is the leading cause of death from disease in Canadian children. Each year, about 119 children in Canada die from cancer. Suzanne and Marco Suzio’s son Madox was one of those children.
Madox’s Story
“It’s so devastating to know you’re completely helpless and completely hopeless.” -Suzanne Suzio
When eight-year-old Madox started looking at his parents with one eye closed, the nurse in Suzanne Suzio knew something was off. She was worried it was a tumour, but her nurse friends told her she was overreacting. After two eye appointments told Suzanne her son had 20/20 vision, she insisted Madox see a specialist.
“As the specialist was examining him, she kept going ‘This is normal, and this is normal’, and every time she said it was normal, I was dying more, and sobbing in the corner,” Suzanne said.
Suzanne took Madox to his pediatrician, who ordered an MRI. That was when Madox was diagnosed with diffuse intrinsic pontine glioma (DIPG). DIPG is a cluster of inoperable brain tumours located in the pons, the middle of the brain stem.
“When they told us he had brain cancer, I immediately asked where. When they told me it was in the brain stem and the pons, my husband was like ‘Okay, we’ll just cut it out.’ And I fell to the ground because I knew there was nothing they could do,” Suzanne said. “I said ‘You don’t understand’ and I was mad. Obviously not at my husband, just mad at life.”
Madox was sent home the next day, which was a Saturday. That afternoon, Suzanne, her husband Marco, Madox, and the Suzio’s older son Valin went bowling to try to keep things normal.
On Tuesday, the left side of Madox’s body looked like he had a stroke. He couldn’t use his arm at all.
“He looked like he was dead, he was zoned out. It was awful,” Suzanne said. She and Marco rushed Madox to the hospital.
Within 12 hours Madox was in the intensive care unit and intubated, which is when a tube is inserted into the patient’s mouth and down their throat to help them breathe. Because the tumour was pressing on the pons, it was affecting Madox’s ability to breathe, swallow and blink. During the two weeks he was in the intensive care unit, he almost died three times.
During this time, Madox began palliative radiation, which is radiation that would temporarily shrink the tumour to give the family more time together. He received radiation for 30 days in a row, with only one day off for his birthday.
Between all the procedures, fear, having a cage locked over his face during radiation to keep him still, and the tumour pushing on the part of the brain that controls emotions, Madox began to develop anxiety.
“Imagine saying to an eight-year-old child, ‘Okay, we’re going to lock you onto a table’, and you have to leave him in the room by himself,” Suzanne said. “I was bawling, his dad was stressed, and he’s freaking out and saying ‘Don’t leave me, don’t leave me!’”
Madox was moved from the ICU to CK5, the pediatric oncology floor at The Children’s Hospital of Winnipeg, for five days until his family brought him home to care for him there.
“I refused to stay. I said ‘You guys aren’t doing anything for him. He has no dignity here.’ Nothing against the staff, but you get more dignity at home,” Suzanne said. “I said, ‘I’m a nurse, I can do all his care, just provide me with a hospital bed.’ And I told them ‘We’re going home on the 29th because he’s not spending his last birthday in the hospital.’”
They went home on March 20, and after that, Madox only returned to the hospital for checkups and radiation treatments.
The next few months revolved around taking care of Valin, keeping Madox comfortable, and making memories for him.
Suzanne and Marco knew Madox was going to lose the ability to swallow again, so they let him eat anything he wanted. This was a change for Suzanne, who always tried to teach her sons the importance of healthy, home-cooked meals.
“He would say ‘Mom, I would like McDonald’s’, and it was rare I would let them eat McDonald’s. But I was like ‘Okay, let’s go to McDonald’s’. On his last day of radiation, I said ‘You can have anything you want.’ He picked McDonald’s. All my friends found it hilarious.”
After being diagnosed, most children with DIPG live for eight to 12 months, and when Madox was diagnosed in March, the doctor said their family would celebrate Halloween together. But Madox started to deteriorate again in July and passed away on August 8, 2014.
Suzanne is relieved Madox didn’t suffer and wasn’t “locked in,” which happens when the patient can no longer move their body but are still fully aware of everything that’s happening.
“There are a lot of kids who will be locked in for months, and I would die if Madox knew everything we were saying and doing, but couldn’t move anything,” Suzanne said. “He was older, so he was aware of everything that was happening. It would kill me as a parent.”
The day Madox died, Marco started throwing out all the snacks Madox had requested and started saying they were the reason Madox got cancer.
“Our sons never heard us swear before, but that day, as soon as the funeral home came and took Madox, we both lost it,” Suzanne said. “I was swearing and putting all the medication in a bag, and I threw it at the door and I was like ‘This fucking shit didn’t work’ and Valin was just staring at us.”
For the first few months after Madox died, Suzanne barely ate or spoke. Marco would say “I know you’re hurting, I’m hurting too. We’re going to get through this.” Then, he would hug her until he felt her body relax, even though she never hugged him back.
“It was a good seven months before I realized I had this barrier up because I was blaming myself for not being able to fix it,” Suzanne said. “I’m his mom, I should have protected him. I’m a nurse, I should have been able to see it and stop it. If Marco hadn’t recognized that, I’m sure we would have divorced.”
It took Suzanne three months to realize she was neglecting Valin. “He would say ‘No, it’s okay, Mom’ and I was like ‘Oh my god, if you can go back to school, and I’m doing this, I’m a terrible mom.’ It was a lot of tears.”
The year after Madox died, the Suzios started Madox’s Warriors Foundation to help fund research for DIPG treatments. Since 2015, the foundation has donated $157,000 to Dr. Oren Becher, a DIPG researcher at Northwestern University Feinberg School of Medicine in Illinois.
“We wanted to start Madox’s Warriors Foundation to give families hope because it’s so devastating to know you’re completely helpless and completely hopeless. Marco said ‘If they finally find something that will give families hope when we’re 80, then we’ve done something. I want to be part of giving those families something.’”
Childhood cancer isn’t black and white
These four stories offer only a small view of what childhood cancer really is. Each family’s experience is different because childhood cancer is different for each family.
Childhood cancer isn’t only traumatizing experiences, sometimes it’s laughing or blowing party horns to help get through tough situations.
Children with cancer get more than chemotherapy — they get radiation, isolation, surgeries, infected port-a-caths, gastrointestinal tract sores, and spinal taps.
Childhood cancer isn’t always a death sentence, but unfortunately, sometimes it is.
There are hundreds of different stories, emotions, and experiences felt by hundreds of families.
These stories — mine, Ross’s, Malcolm’s, and Madox’s — are only four of the 943 childhood cancer stories from Canada every year, according to the Canadian Cancer Society. The more of these stories we know and talk about, the more awareness this disease will get. And maybe one day, there won’t be any new stories to tell.