Weekly column: Let’s be the village that gathers around Riel and his family

Originally published as a column on CFJC Today Kamloops and Armchair Mayor News on November 30, 2020.

It’s past 5pm on Saturday and the ambulance that has been parked in front of the Superstore for the entire day collecting food and toy donations has yet to leave. A few more people trickle out and add to the pile.

I am one of them. I thank the paramedics for the vital role they have in our community, and once again, for being there when our family needed them. I don’t get to see how much they’ve collected because once I throw a peek inside, I am reminded of the time when my youngest, 7 at the time, was being taken to the hospital. His little body was struggling to breathe due to a particularly severe asthma attack, and I was sitting next to him, holding his hand and hiding tears behind a smile because that’s what you do for your child even when you are broken inside.

That’s a story that Frank and Bonnie Lepine Antoine know too well. Their son Riel just turned two this month and has been in hospitals since he was 7 months old, when he was diagnosed with High Grade Wild Type Infant Glioma brain cancer. It’s the rarest form of cancer, his parents were told. In fact, he might be the only child in the world fighting this.

And a fight it is, which his parents and extended family support him through. But of course, Riel is but a toddler and, as his dad explains, ‘he doesn’t know any different.’ That is both a blessing and a curse, the two sides of a story that is absurd and heartbreaking.

Frank has for now moved to Victoria to be with Riel 24/7 while he undergoes treatment, while his wife is back in Kamloops with their other two children, age 6 and 8, after being at the coast since it all started. Grandparents have been there for support all along, but still, bills need to be paid and children need to go to school. And of course, they need some normalcy in this storm that has enveloped their family.

The family connects virtually all the time and it’s far from ideal, but it works. Frank spends every moment with Riel, and his wife takes care of their home here. Tears and hugs fill the space in between, and love – for each other and for their children, provides the fuel to continue on their journey.

Today Riel is starting a fifth round of chemotherapy (second protocol.) The very word sounds wrong and ominous when applied to a child who is just as silly and playful as any other toddler. Riel may feel really sick for about a week and he may vomit. For the month following the treatment, he will have no immunity since his blood count goes really low and because of that, he sometimes needs blood transfusions.

‘The stem cell transplant that we went through a while ago was the harshest,’ says Frank. After seven days of no sleep, complications and worry, they saw the tiniest smile and they knew Riel had pushed through. Frank breaks down as he tells me all this.

I cannot imagine. I listen and tear up. Again, the absurdity of it all is massive, but thinking of that is not a luxury his parents can afford.

‘I don’t look behind at what we’ve been through,’ says Frank. He immerses himself in today, and he follows Riel’s lead. Toddler’s joy is the beacon that shines the way to hope when all seems lost. Frank laughs as he talks about the way they play together and delight in silliness.

Meanwhile, the reality of life bites deep and it hurts. Frank had to put his successful career in tourism on hold to take care of Riel, and then the pandemic brought yet more challenge to a situation that was already desperate.

Fundraisers such as this one are a lifeline that Frank and Bonnie depend on to make it through. They now have expenses for their home in Kamloops, and for the place in Victoria while Riel undergoes treatment.

Please consider helping if you can. Our community has a soul like no other, I have seen it so many times. It’s what glues us together, and in this case, it’s the village that rallies around the children and their parents when they need it most. The circle that keeps them safe and preserves our humanity.

Food is high on the list of needs – please help with grocery store gift certificates.

It’s not just the money though, says Frank. ‘We need money to pay for the tangible things in life, but if I had to choose between money and prayers, I’d choose the latter,’ he says.

I found myself tearing up yet again as he said that. Let’s not make it a choice for them. Please give both.

For food donations via gift certificates, please get in touch with Frank at frankant27@gmail.com.