Ottawa family 'blown away' by strength of 8-year-old battling rare cancer they 'had never heard of'

Angie Poirier's son, Nash Cote, is an “absolutely full of energy, and a full-of-fire kid.” The Ottawa-based radio and TV broadcaster said her 8-year-old was “always outside playing, running at everything with 100 per cent” before he was diagnosed with rhabdomyosarcoma (RMS), a rare form of cancer that begins in muscle cells and accounts for just three per cent of childhood cancers.

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Poirier, Nash and her husband, Adam Cote, spoke to Yahoo Canada as they were settling into an apartment called Christopher’s Haven, a residence dedicated to families of children receiving treatment at Boston General Hospital. It was their new home while Nash underwent radiation.

“It’s good for him to realize that there are other kids going through this, too,” Poirier told Yahoo Canada. “Because none of his friends or classmates are going through this. It’s good for him to see that other kids are going through it and coming out strong. We share the success stories with him a lot.”

'It wasn't alarming, but it was something'

Poirier’s journey as an oncology mom began on March 22 — Nash’s eighth birthday. Poirier and her husband traveled with an excited Nash to Syracuse, N.Y. to see his favourite basketball team, the Syracuse Orange, play at the local university. Up until that day there had been no indication that anything was wrong. That night at their hotel room, Nash mentioned that he felt a lump in his left cheek.

“It wasn’t anything I would have gone feeling for,” Poirier said. “You really had to push to feel it. In your ‘mom mind’ you think maybe it’s a cyst or something. It wasn’t alarming, but it was something. But thankfully he told us because it wasn’t visible. If he hadn't told us, I don’t know how long could have gone without us knowing it was there.”

The parents made a mental note and decided to have it looked during Nash’s next doctor’s appointment. However their longtime family physician had just retired — and the new doctor taking over was inundated with requests. It would be months before they would be able to see the doctor.

“We thought, ‘Is this the kind of thing we wait on — it’s a little pea-sized thing — or do we push for an appointment?’” Poirier recalled.

But within the next couple of weeks the pea-sized lump grew. Poirier decided to take Nash to a walk-in clinic not far from their home in Ottawa. After a four hour wait, the on-call doctor couldn’t give them any definitive answers — but ordered blood work and an ultrasound.

“He said it could be a blocked salivary gland, or it could be that Nash was fighting off a cold or infection and it was kind of like a swollen lymph node,” she said. “There was a lot of different speculation about it.”

That night, the doctor called and said he was referring Nash to Children's Hospital of Eastern Ontario (CHEO) for a second opinion. They met with an otolaryngologist (ear, nose and throat specialist) who ordered more images — but the new MRIs and CT scans were still inconclusive.

“Thankfully, they decided to do that because the biopsy was the only thing that definitively said this is cancerous,” Poirier said. “With all the cancers you hear of, I had never heard of that one.”

In an essay for Honest Talk, Poirier wrote about the moments she learned her youngest child had cancer.

"I will never forget the feeling of folding, like a broken paper doll, into my mattress, burying my face, and unleashing guttural cries from depths I hadn’t known," she said. "I couldn’t comprehend it. My thoughts were spinning with, “But he doesn’t look sick. But he just played three great games of basketball in his tournament. But he’s only eight... We were, in the blink of an eye, an oncology family."

'The ugly of it all'

Rhabdomyosarcoma is a rare soft tissue cancer. “Almost all rhabdomyosarcoma are from random mutation,” says Donna Johnston, MD, FRCPC, FAAP who works in the Division of Hematology/Oncology at CHEO. Johnston is also a Professor at the University of Ottawa. “But there are some tumours that are associated with an underlying genetic abnormality.”

The family quickly learned that the rarer the cancer, the less research available. Treatment options for rhabdomyosarcoma have been the same for decades, with little to no advancement. One treatment option — a surgery called a parotidectomy — was off the table right from the start.

“Nash’s tumour is in his cheek. That would mean cutting off all these facial branches including this lymph node,” Poirier explained. “It’s what they call disfiguring, life-changing surgery. There’s no guarantee that they would get it all, and he would still need radiation.”

Poirier and Cote sat down with the surgeons and got what she called “the ugly of it all.”

“A surgery of that magnitude would change his ability to use that side of his face, his smile, his eating, his eye, his hearing — all of it would be affected,” she said. If the couple thought the surgery was going to cure Nash, they would have done it. “But there was no guarantee that they would get it all. He might need multiple surgeries and it wouldn’t have spared him radiation.”

Still, Poirier and Cote did their due diligence, but “after speaking with the surgical team in Ottawa as well as a surgeon at SickKids Hospital in Toronto, it was very clear that subjecting Nash to what life would be like with no real pay-off would be a gamble we weren’t willing to take.”

Barely a week after being diagnosed, Nash started chemotherapy. Treatment involves 43 weeks of chemotherapy. At the time of our conversation, Nash is in week 16. “They said they would introduce radiation at week 14,” Poirier said.

The family travelled to Boston for proton radiation — a treatment that isn’t available in Canada. Proton radiation involves a made direct, targeted beam right at the tumour and it is able to spare the healthy tissues all around and on the other side of the face.

“Proton therapy is used when there is concern for radiation received by normal tissue outside the radiation field,” said Johnston. “It is only available in the U.S. at this time.” Although it's unavailable in Canada, Nash's treatment has been approved by OHIP. “But this need to travel is sometimes not possible for some families,” Johnston added.

“Photon radiation, on the other hand, would go in on the tumour side of his cheek but it would come out the other side,” Poirier said. “It would be damaging to structures in his eye and in his head.”

She explained that with proton radiation — especially a sensitive area such as his face where he’s still growing, those muscles and bones are still growing — it’s his best chance at killing off unhealthy tissues. “There would be symmetry issues because as he grows at a normal rate on the healthy side, the side that’s been radiated on will grow at a slower rate.”

The treatment has taken its toll on Nash. “He used to run everywhere head first and now we actually had to buy a transport wheelchair for him," Poirier said. "Even just walking back and forth from our place to the hospital — which is only across the street — by the time we get up to the buildings, he’s completely winded. It’s so crazy to see your active eight-year-old in that state.”

Superhero support

In August, Poirier shared photos of Nash receiving his first round of treatment in his custom-painted Deadpool mask. The mask caught the attention of Deadpool star Ryan Reynolds, who sent a video message to Nash and his family.

"You’ve been holding and carrying a burden that most adults couldn’t even handle and I’m thinking about you," Reynolds said in his video message. "I know what you’re doing is hard, but from what I know about you, Nash, is that you are very very good at hard things.”

Weeks later, Reynolds surprised Nash at Boston General Hospital with signed Marvel memorabilia. The pair chatted and FaceTimed the actor's Deadpool & Wolverine costar, Hugh Jackman. The visit was a bright spot for Nash, who returned home to Ottawa to complete chemotherapy until February 2025.

The good news is that they are already seeing definite regression with the chemo. “It’s definitely smaller in size. He can feel it, I can feel it, and they’ve confirmed it on the scans,” said Poirier. “The radiation is going to do even more than the chemo for that.

“Any cancer family will tell you anytime there's a scan, there’s a real thing called ‘scanxiety’,” said Poirier. “So far all of the scans he’s had since he started chemo are showing us going in a good direction. Even when this is all done, it’s not done,” Poirier explained. “We will have scans every three months just to check if there are any pop-ups anywhere else or any migration.”

Friends, family and their community have been rallying around the family during this difficult time. A GoFundMe was set up to help ensure Nash's parents can be with him through every step of his health journey.

Poirier said that Nash has been very positive throughout the whole experience. “He’s showing a strength that we are blown away by.”

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