as told to: a london, ont. family shares their story of survival and resilience in the face of childhood cancer
8 minute read
the wynette family (from left to right), kyle, nash, who was diagnosed with acute lymphoblastic leukemia in 2018, reid and julie. supplied
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at only nine years old, nash wynette is a cancer survivor after having been diagnosed with acute lymphoblastic leukemia (all) in 2018 and undergoing over two years of treatment. but you wouldn’t know it. a broad, bashful smile tends to always cross the young hockey player’s face, and with the constant support of his parents, julie and kyle, it’s hard to imagine the family ever went through such a difficult time.
their heroes have not only been their family, friends and community, but the pediatric oncology group of ontario (pogo). the childhood cancer care system for kids, youth, their families and survivors in ontario was able to help the wynettes find treatment through london’s children’s hospital, along with financial assistance (which allowed them to hire help on their farm and find childcare for their youngest son, reid) and a nurse who did regular home visits in the days after nash’s diagnosis to help the family navigate a new “normal.”
while it is relatively rare, in canada each year, around 1,000 children are diagnosed with cancer, while just over 100 don’t make it. still, survival rates are high and steadily improving for many types of childhood cancer.
in hope of raising awareness of just what this experience can be like for a child and their family, this is the wynettes’ story, as shared by julie and kyle.
the early days
when we found out nash’s cancer diagnosis in 2018, it was overwhelming. we’d had a feeling something was wrong that week; he was lethargic at hockey, didn’t have energy, had a nap during the school day, hadn’t participated in recess — all because he was tired. during one of his hockey games, he was usually one of the zippiest ones out there, but he was just standing around that centre ice.
then there was one spring day when the boys went out on the swing set, and nash came in and said, “i think i’m too big for the swing now, because it really hurts my hips.” he was growing so fast at the time, so we chalked it up to growing pains. but then the bruises appeared on his hips, his legs. we took him into the hospital. it all happened so fast. we had no idea that they could diagnose something like that so quickly; it was an out of body experience.
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it was right before easter weekend, and we were rushed to london, which we live about an hour away from, and the first person we met was the oncologist, dr. paul gibson. he told us, “this is what’s going on, i don’t have a lot of time to explain it. you just have to trust me. we want to get his port put in before the weekend and move things along quickly.” those first 48 hours were a blur.
the next day, the doctors identified what strain nash had: acute lymphoblastic leukemia, which is the most common cancer in children. dr. gibson reassured us that this form of leukemia responds very well to treatment, which gave us a lot of strength in knowing that this is our battle now, this is what the next few years are going to look like and we were going to get nash healthy.
when cancer became the new normal
nash’s treatment ended up being two and a half years. the first month was what we called “don’t burn down the house to turn off the light switch,” meaning try not to find diagnosis and treatment online to the point of panic, just trust your medical team. through pogo — and it was really reassuring — money was not a limitation as to what treatment nash received; it was the same protocol at every pogo hospital. margaret, who was our pogo interlink nurse (and has since retired), was particularly special. nash was only an inpatient for the first 10 days, though he was in and out of the hospital for those two and a half years. when we came home, it was like bringing in a newborn babe, we were so scared, and he was on steroids for the first time. it was very challenging, but margaret made it easier with her home visits.
by the following fall, with his treatment and all the help we had, nash was able to carry on with his life somewhat normally. on sundays, he would have chemo in the morning and then come home and play hockey at night. because he had a port under his skin, we put a hard plastic chest protector over it, so he had what we like to call his “armour.”
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the hardest days
one of the tougher moments was a day when he had an allergic reaction to a particular drug. they had a crash cart ready, and it was at the end of a long day at the clinic. it was like in a cartoon; he ballooned up. they were on it right away, putting benadryl into his port. his breathing began to slow and it put him to sleep for a bit. when he woke up, he didn’t know what had happened.
we’re hoping this year will be the first year that he finishes the school year, because he gets sick every june. one year, he was in hospital for two weeks and we thought he was better, but he got pneumonia and then it developed into rsv. he also had cold sores down his esophagus into his stomach. it took so long to diagnose, his blood counts were bottomed out, he was losing so much weight. he couldn’t eat because he couldn’t swallow, so they were feeding him through feedbags with morphine on a pump. he just looked so sick; you could tell he was in pain. it was a very tough time. and it’s not easy trying to cheer up a kid who’s going through that, though they did great things at the hospital. they had the london knights come to the room, and therapy dogs. you do what you can.
finding community
one of the brightest spots, though, was the support we received. we come from a pretty small, tight-knit agricultural farming community, so we knew when nash was diagnosed that it would affect our families, but it also made an impact on our community. one of the most humbling things was the way everybody wanted to do something. they gave us gas cards, teachers came for cuddles. they held a blood donor clinic — our family made homemade donuts for everyone who came to donate.
there were these four moms, all with sons with the same type of leukemia as nash, who live within a 30-kilometre radius of us and who reached out on facebook and said “welcome to this shitty club.” their sons and nash are all friends to this day. they and so many kids with the same diagnosis have this same port scar, it’s like a badge of honour for them. they threaten us that they’re going to one day have matching tattoos!
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we also have reid, our other son, who was just three years old at the time and who we had to leave at home for nine days, which made it all even more difficult. it was also hard to talk to other parents, even if they understood that feeling of not being able to be there for all of your kids.
on one of our first days at the hospital, there was a father pushing his child who had lost his hair. the father was wearing a shirt that said, “my son is my hero.” that was hard to see, but the people you meet during an experience like that, they stay with you. sharing our experience with other people ended up being like counselling for us. you become good friends because you can relate to what each other has gone through. it’s also therapeutic for us to now be in this position where we can finally start sharing nash’s and our story. it’s why we’re passionate about doing whatever we can to raise awareness about what this experience is like and how you can find help.
a brighter future
today, nash is doing well. he loves school, he has good friends, he still loves hockey and baseball. he lives a pretty social life and he’s a happy, healthy boy. after the first year post-treatment, it was into the clinic for bloodwork and a meeting with the oncologist once a month. then it was every two months and now we’ve been moved to every three months, so this is the longest we’ve gone without going in for bloodwork, which is getting easier. there’s always a little bit of anxiety when you’re waiting for the results and especially this time of year — march, the change in weather — it brings up memories.
all in all, going through something like this puts everything into perspective. we finished treatment in july 2020, so we’ve been quarantining since before it was cool. and now, coming out of it, it’s as if nothing else matters. only friends, family and health. only the happiness of your kids. it was absolutely a nightmare at the time, but we’re always reminded that it could have been worse.
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what we want to say to other parents is that it can get better. we remember there was this one couple we met, it was their daughter’s first time waiting for a lumbar puncture, which is a routine procedure. you go and sit in the hallway for what is probably 10 minutes, but it feels like an hour. this couple, they were us a year before. we struck up a conversation with them. sure, you’re not supposed to ask somebody’s business, but we were in the exact same boat. they knew it and we knew it. and it was so nice to be able to look them in the eye and say, “we are you in a year or two. have faith, and trust these doctors, scientists and nurses. they’ve done all the research; they know what needs to be done to get you to the other side. you’ve got to take it not even day by day, but minute by minute and just keep moving forward. just keep moving forward.”
sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.
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