The impossible happened: My 16-month-old baby has cancer

How can my sweet little baby boy have cancer? This is how we made it through his treatment.

Photo: Courtesy of Kathy Motton

My baby has cancer. My sweet, snuggly, smiling boy who still plays with my hair while breastfeeding and loves long walks wrapped high on my back, burying his head into my shoulder, has cancer. I want to scream from a mountaintop. I don’t know how to process this information, so I tell everyone I encounter: the waitress at our favourite restaurant, strangers at the dog park. Maybe if I say it enough times, it will feel real. Maybe I’ll feel as brave as everyone keeps telling me I am. Maybe I’ll cry. I’m terrified to feel anything resembling sadness—it’s too similar to loss.

Looks of shock typically follow our cancer bomb. The cashier at the grocery store hugs me after Annabelle, my outgoing, curly-haired five-year-old, blurts out “My brother has cancer!” I wonder how long we should embrace and whether we’re easing her discomfort or mine. Friends and family bring too much lasagna and shepherd’s pie and offer to watch our little girl, who is suddenly dealing with an absent family in crisis. Some people find it too hard to deal with the reality of cancer and disappear, talk to me as if nothing has changed or use empty platitudes. I want to yell, “Everything does not happen for a f*$&ing reason!” Instead, I swallow the anger and sadness until it hardens in my chest, becoming part of my armour. But no amount of mom power can counter the pain and suffering that my 16-month-old is about to endure.

We grow accustomed to the volley of questions: How are you coping? What’s the prognosis? How did you find out? While there is so much we don’t know (Why Oliver? Will his cancer respond to chemo? Will he be OK?), sharing the details we have gives us something concrete to which to tether ourselves. Facts are easier to digest than fear.

The truth is, we found out almost by fluke: My husband, who considered a career as a doctor and has an annoying habit of self-diagnosing, noticed what he thought was a hernia on Oliver’s stomach. I dismissed it as nothing, but I casually mentioned it to our paediatrician at a check-up two months later. I was so confident that he was wrong, I was half-smirking when I pointed it out. Her response shook me: “Yes, there is something there: a mass. I’m booking him an ultrasound appointment immediately.”

I call my husband in a semi-panic as I buckle Ollie into his car seat. I check the straps, kiss his forehead and push a stray hair out of his eyes. My little boy smiles sweetly at me. He doesn’t look sick. The mass has to be benign—we would know if our baby has cancer, right? You don’t ever think your child has cancer. That happens to other people’s children, right?

The reality is, more children die from childhood cancer than from any other disease. In Canada, more than 10,000 children are battling cancer right now. Cure rates are typically greater than 80 percent, but “cure” seems unsuitable given that about 60 percent of them will deal with late effects, such as neurocognitive impairments, fertility issues and secondary cancers. Almost everyone knows someone whose child has cancer, but that doesn’t mean we’re great at talking about it. We scroll past the kid with the bald head on our social media feed as if cancer is contagious and avert our eyes at the park.

But I can’t escape the narrative unfolding in front of me. Our ultrasound appointment is booked for the next day. The technician is sombre as he runs the wand over Oliver’s belly, and my baby screams as we hold him down. We’re immediately sent to the emergency room for bloodwork and an emergency CT scan. Later that day, a tumour specialist diagnoses Ollie with hepatoblastoma (paediatric liver cancer), and our son is admitted to SickKids for cancer treatment. It’s only 36 hours from his routine check-up—Canada’s medical system is only glacial when you’re not that sick.

Mom carrying her toddler on her back

Photo: Courtesy of Kathy Motton

I call my best friend and make arrangements for her to watch Annabelle. I’m terrified for both my children and what this will mean for my family. The next morning, we’re in Oliver’s room on the cancer floor to meet with three doctors: the tumour specialist from the night before, the fellow assigned to our case and a surgeon. “Let’s start with the liver,” he says. My heart breaks in half—there’s another organ to discuss. I haven’t fully digested news of the 11-centimetre grapefruit-size tumour attached to his liver when they get to the second organ: his lungs. It’s a tiny spot, which is good, but a second organ means a stage 4 diagnosis. Stage 4. It keeps repeating in my brain and I can’t stop it. Stage. 4. Cancer.

Oblivious, Oliver climbs back and forth between me and my husband, stealing little kisses, and then, in a surreal moment, reaches for the surgeon and jumps into his arms for a big hug. The entire room laughs, but the seriousness returns quickly.

“Any fevers or vomiting?” he asks. We’re still in shock as we answer: “No, not at all.”

“Appetite?” “Not great, but we thought he was teething.”

I feel guilty. Should I have known? Did we eat too much sugar? And why did I browse social media so much while breastfeeding? Did I cause his cancer with my phone? I agonize over every detail while our fellow assures me that I’m not responsible for my son’s cancer. (Paediatric cancers are typically caused by an embryonic or other cellular growth malfunction rather than lifestyle, as with some adult cancers.)

The first step of Oliver’s treatment involves installing a port (an object surgically implanted under the skin that provides direct access to the veins for chemotherapy and blood draws). While under anesthesia, the surgeon also extracts the small cancerous spot on his lung. The surgery is long, and I spend six hours doodling in an adult curse-word colouring book. I line up my pencil crayons from red to violet and turn “Well, aren’t you just a ray of f*$&ing sunshine?” into a rainbow. It doesn’t come close to killing the excruciating six-hour wait.

Five days later, Oliver is transferred from the critical-care unit to his own room on the cancer floor to start chemotherapy. His cancer protocol recommends four cycles of chemotherapy to shrink the tumour, followed by extraction of the tumour and affected liver, along with six more cycles to destroy any remaining cells. In theory, we should only spend biweekly chemo nights at the hospital and return home. In practice, we end up staying overnight often because his immune-compromised body means that he is prone to infection. My husband and I try to alternate nights at the hospital so we can minimize the impact on Annabelle. It feels as though our family unit has been torn in two.

Biweekly chemo nights at the hospital are intense. Oliver wakes up screaming, sometimes hourly. He is too young to tell us what’s wrong, and it’s often a guessing game to try to console him. I nurse and rock him to sleep, gingerly transferring him into the steel hospital crib, hoping to get some sleep myself on the hard daybed beside it. It’s like having a newborn, but without any of the joy or wonder. Sometimes I lie awake, listening to other children and babies screaming from neighbouring rooms.

Oliver will no longer touch ice cream, peanut butter or yogurt—his favourite foods before the diagnosis. Nausea has seized his appetite, and the doctors insert a feeding tube to keep his body strong for surgery. Despite this, he doesn’t look skinny. He has the round, puffy face that cancer patients develop from the steroids administered to prevent nausea and vomiting. They also make him ragey. At his worst, he screams, yells and hits. Toward the end of every two-week cycle, the steroids and nausea wear off and his mischievous personality reappears, but then it’s time to return to the hospital for more chemicals.

His hair thins. He officially “looks sick.” Random strangers stop me to ask, “What’s wrong with him?” I learn to project unapproachability to avoid the awkwardness of an honest answer. These conversations are no longer therapeutic, but we need groceries and other essentials. Annabelle has school, ballet and skating lessons. Even in times of crisis, life goes on.

Smiling little boy wearing a superman costume

Photo: Courtesy of Kathy Motton

The days pass and the tumour responds well, shrinking fast and away from the vena cava (a large vein that carries blood from the lower half of the body to the heart). It’s now time for the big surgery—the day I’ve been dreading since his diagnosis two months earlier.

That morning, I push Oliver’s legs and arms through a hand-me-down Superman costume and pull the feeding tube out of his nose because it can’t stay in during the operation. Without the tube, he immediately looks healthier. We are three weeks from our last chemotherapy treatment, and his strength and personality have returned. His cape is flying behind him as he runs through the hospital, climbing all over the chairs and back and forth through the surgical waiting room. He looks like he could leap a tall building or run faster than a speeding bullet. I place my little superhero on the surgical bed, stroke the remaining hair away from his face while the anesthesia kicks in, kiss him on the forehead and make my way to the waiting room.

I alternate between scrolling through Facebook and colouring in my adult colouring book—this time a dog that resembles our French bulldog and the words “B*tch, please.” I try not to think of all the terrible things that could go wrong. The outcome is good: The tumour is extracted with excellent margins, which means that the doctors feel confident that they have removed all of the cancer and are leaving only healthy tissue behind. The first night after the surgery is one of the hardest: He is in the intensive-care unit, spiking a fever and needing a blood transfusion.

Fortunately, he recovers quickly and we’re able to start the “clean-up” chemo nearly one week later. Six more biweekly chemo cycles remain, with some delays for infections, including a scary bout of the flu and a stubborn case of Clostridium difficile. We get through it and celebrate his final treatment with a dance party in our living room that my daughter dubs the “No Cancer Dance.” Annabelle and Oliver stand on our dining room table, embrace and shake their booties—as only kids can—to “How Sweet It Is (To Be Loved By You).” It’s a moment of pure happiness.

It’s now just over a year since the diagnosis and six months from our No Cancer Dance. Oliver, now a rambunctious toddler who laughs with his whole body and throws temper tantrums with equal enthusiasm, is a healthy and happy two-year-old. No longer tired, nauseous and grumpy from chemotherapy, he tornadoes through our home, chasing Annabelle and leaving a trail of Thomas the Tank Engine trains behind him.

The four of us are slowly beginning to heal, but we will never return to normal. Relapse is always possible, and we’re dealing with late effects from the harsh chemotherapy. We recently learned that Oliver has moderate hearing loss from his treatment and requires hearing aids, and we need to continue to monitor his heart, kidneys and general health.

Brother and sister wearing a Wonder Woman and Superman t shirt

Photo: Courtesy of Kathy Motton

Like almost every other cancer parent, I wish there were less harsh treatments available. Only five percent of cancer funding is earmarked for childhood cancer. Each childhood cancer type requires specific clinical trials before becoming protocol, so that measly five percent becomes an even smaller slice. So here I am, back to oversharing our cancer journey with strangers. I wrote this story in the hope that it will help raise funds and awareness—anything that will mean we can move science forward for these kids. I’m up here screaming from my mountaintop. Will you scream with me?

September is Childhood Cancer Awareness Month. Please consider donating to a local paediatric hospital or organization, such as sickkids.ca, or to childhoodcancer.ca. There’s a world of tiny superheroes out there who will thank you.

Read more:
I thought my baby had a fever. It was cancer
Battling brain cancer, I became our family’s third child
What life is like when you have breast cancer—and kids

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