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‘first day of stage 4’: a family’s journey through childhood cancer
7 minute read
“it’s made me really take a look at what makes me happy. i think once you go through this experience, you realize that the important thing is to not dread every single day, because literally it can get pulled out from under you in two seconds to see a three-year-old who almost died.”
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when her little boy luca started having stomach pain and hardly had the energy to play soccer, nicole raso knew something wasn’t right. he was three. he should be a ball of energy, just like the other kids learning the game. in fact, registering him for soccer was a big deal because this was early summer 2022, when things were opening up after the pandemic. the idea of life becoming more normal felt liberating for the hamilton, ontario mom and her family, who didn’t expect that things would turn quickly to uncertainty, fear—and a devastating diagnosis.
“he started getting a distended stomach, which originally we thought, he’s a kid, he’s just getting a little gut,” nicole says. “but then it started getting a bit painful and shifting a little bit to one side. i thought it was constipation.” she took him to see their family doctor, who suggested taking him to emergency to get him checked out, possibly putting a tube down his throat to release the gas. while nicole thought that sounded traumatic, it didn’t prepare her for what was to come.
shock of childhood cancer is ‘surreal’
the emergency doctor pushed into his stomach and felt a ball. she ordered x-rays, ultrasound and blood work, and those came back with the news that luca had five large masses in his little body. he needed further scans to determine the type and stage, but it was cancer.
“he declined pretty quickly after that. he was in a lot of pain, so we had to bring him back to the hospital. our oncologist was able to sit down with us and give him his diagnosis,” she recalls. he had stage 4 wilms tumour, an aggressive form of childhood kidney cancer. kidney and renal pelvis cancer account for about seven per cent of childhood cancers in canada. his had spread to his liver. nicole automatically thought about the very real possibility that she could lose her son.
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the shock was surreal. “it’s a whole other world. it’s like you’re almost floating, where it doesn’t even feel real. you’re like, ‘where am i? how is this possible?’ it’s a flood of emotions because you’re also now put into the oncology ward, where you’re specifically with oncology families. we were saying, ‘why our son, why him, why us?’ and it switches to, why anybody? because you see all these little kids with iv poles and the obvious sign, bald heads. it’s a very depressing place to be. and it quickly becomes your normal.”
with a wilms tumour, the first step is typically surgery to remove the tumour, but luca’s tumour was so big that it was too dangerous to go into surgery cause it could burst and spread even further. so the team started with two months of chemotherapy. this was september 2022, with people cautiously coming out of the global lockdown while the raso family, which included luca’s younger sister olivia, was trying to find their footing and stay strong.
the physical effects of chemotherapy and radiation
luckily, the tumour shrank enough that he was cleared for surgery that removed his kidney along with it. they didn’t touch his liver because he was going to get radiation. the tumour, however, returned, which meant he needed to be treated with a very strong chemotherapy plan going forward, as well as 15 rounds of radiation.
“obviously, he lost his hair pretty quickly, and a lot of people said, ‘oh, it’s hair, it just grows back.’ and i’m like, it’s so much more than just hair. it’s what it signifies. so once it started falling out, i was like, it’s hitting him. i can physically see the effects along with other signs. but like the hair is a huge one. nausea is especially hard. there’s a whole laundry list of reactions that you can get.”
that wasn’t the worst part, though. nicole says the scariest thing about getting chemo and radiation is the long-term side effects, especially for childhood cancer. their bodies are still developing, and they have their entire lives yet to live. the most significant effect is the high risk of secondary cancers, depending on the cancer type. for luca, this means early screenings and monitoring for colon and skin cancer. he’s also at high risk of infertility.
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luca, now six, finished treatment in june 2023 and he’s two years clear of disease. the five-year mark is considered a milestone where the cancer isn’t likely to recur. when his type of cancer returns, it usually happens in the lungs, nicole explains, so he still has three years left to go.
how cancer changes your perspective
“the biggest thing that parents want people to know is we’re here and (our kids) survived. however, at what cost?”
for really young kids with cancer like luca, who went through so much at age three, the hair loss and nausea are what life is like. people tell nicole that it’s amazing this happened when he was so young, and he won’t remember the hard parts. but there’s a lot to face in the years ahead.
“yes, it’s amazing in the sense that he knows no different. and so he truly thought that this is just what kids go through. he sees other kids, he makes friends in the hospital. he didn’t really have friends because of covid. so he doesn’t know what normal really is. this is normal to him. we talked about his cancer. we called it his ball in his stomach.”
parents and caregivers, too, are deeply affected by childhood cancer. for nicole, it’s changed her perspective.
“it’s made me really take a look at what makes me happy. i think once you go through this experience, you realize that the important thing is to not dread every single day, because literally it can get pulled out from under you in two seconds to see a three-year-old who almost died,” she says.
while many parents see their child finish treatment, they want to get out of the hospital. they don’t want to connect with another cancer parent or talk about cancer. they need to step back. there are others like nicole who want to dive in, help other families and create awareness about the challenges of childhood cancer. she switched careers, moving from human resources to childhood cancer canada as the office and program coordinator. the charity is dedicated to raising awareness, investing in critical pediatric oncology research and clinical trials, and providing support to families throughout their journey.
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nicole knows exactly why having support makes a difference and keeps you going.
“find people who are going through it, who really, truly understand, regardless of the type of cancer or the age of their child at their diagnosis. i can still connect with a mom who had a 14-year-old diagnosed. although my child was three and our stories look different, we can totally understand each other. i don’t fault anybody outside of this space for not knowing what to say. but it’s a different level of connection. the people who really help you make it through, they’re not here to cure the cancer. they’re other moms, other parents, other dads.”
she’s also vocal about bringing attention to childhood cancer so people will understand that more needs to be done: cancer drugs are designed for adults but given to our kids, families need more financial assistance, and kids need ongoing support during and after treatment.
according to the public health agency of canada surveillance data, more than 60 per cent of survivors face long-term physical or mental side effects, and nearly 30 per cent experience severe or life-threatening late effects. while adult cancer patients face an average of $33,000 in out-of-pocket costs over their lifetime, costs are often higher for families of children with cancer, as parents may leave work to provide full-time care, and expenses like travel, parking, meals and childcare add up.
telling luca’s story for childhood cancer awareness month
“people get nervous when they see a sick child in a hospital. they see the bald head, they see the iv poles, they see them really sick. so i think what happens is a lot of people turn away and they don’t want to see it,” nicole says, adding that she’s proud of luca for doing his part in a new campaign for this september, which is childhood cancer awareness month, telling his own personal story. he’s holding a sign that at first looks like a first day of school promotion. his reads: “first day of stage 4.”
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luca was diagnosed a week before he was to start junior kindergarten.
“it was a big deal to us because it was covid, and he was finally going to start school and be around kids and be a kid again. and then one week before, suddenly, he wasn’t going to school. we were uncertain about the future. will he ever attend school? and we were bracing ourselves,” she says, tears in her eyes. “he just started grade 2. so we’re there. we made it.”
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