The other night I sat in my back yard talking, but mostly listening to Tori and Sheena Grühn, two sisters I’d reached out to through social media, tell me their story about Tori’s three-year-old son Brody.When I reached out to Sheena a few days ago, I was hoping that she’d call me and tell me a little bit about Brody and about the Team Brody Foundation Inc., which was formed in Brody’s honour after he passed away on September 1, 2015.
I don’t know Sheena or Tori. I never met Brody, but this is Winnipeg and it seems as though we are all connected in some way. In this case, I went to junior high with their older sister and we have some mutual friends. That’s how it came to be that I watched their tragedy unfold on social media, and it gutted me. I was a new mom, watching this young mother go through every parent’s worst nightmare.
I remember looking at his picture and the horrible, horrible words that captioned it.
A wave of despair fell over me, and I’ve never prayed harder to a God I wasn’t sure I even believed in, for anything. There had to be a chance. Kids aren’t supposed to die. Brody wasn’t supposed to die.
He died the next day at 6 pm while his parents lay with him, watching videos of him they’d shot on their phones. Tori said she was playing the last video she’d ever taken of him when his monitors started to “go crazy.” In the video you could hear his little voice saying “I love you,” and in real life he was slipping away. If you believe in signs and miracles and divinity, there was seemed to be so many little signs trapped in that most horrible moment.
They knew it was dire, but they didn’t expect it to happen like that. Not in that moment.
The hospital staff asked Tori if she wanted to bathe her son before they took him away. She did. She cleaned his little body that had endured so much during his nine months of treatment. She held him, and she washed him and when she was done she dressed him in big boy underwear and pyjamas before she said goodbye. She said that there was a kind of peace in doing that.
And then Tori left the hospital to a new reality.
In those first months, she could barely function. She shared her grief on Instagram, spilling her broken heart and soul into each caption and story she posted, and though each post was unbelievably sad she was so poignant and gifted in how she articulated herself. Every word and picture was a testament to this mother’s love and bond to her baby boy.
Tori was just 18-years-old when she gave birth to Brody. He was born five days before she graduated high school, and he even attended her graduation ceremony with her.
For the first two years of his life Tori was a stay-at-home mom. In 2014 she enrolled in CDI College when she was able to get Brody into daycare. She wanted to create a better life and future for herself and her son.
It wasn’t long after he was in daycare that Brody became ill. He was two, but he stopped walking and talking and eating. He became detached. Exhausted. Lethargic. He was always sick, but every trip to the emergency room – and there were a lot of them – Brody was diagnosed with minor ailments, or nothing at all. Three times he had pneumonia, another time it was an ear infection… The lump they’d discovered in his neck was nothing to worry about according to one nurse.
Tori knew something was wrong. Her little boy was always sick, and nothing seemed to be making him better. They would give him antibiotics, he would finish them, and he would still be sick.
Then, in December 2014, Brody’s ear started to bleed. When they looked inside they saw something shadowy protruding out of his ear canal.
They brought him back to the emergency room, and it took six people to hold the little boy down so they could try to cut a piece of the shadowy mass off and send it for a biopsy. They weren't able to cut anything off that day, but they sent the little boy for a CT scan, which confirmed that he had a tumor. The family was sent to stay in CancerCare's Ck5 unit on December 18th until the biopsy and portacath surgery was done.
On December 24 their worst fears were realized when he was diagnosed with stage 3 Rhabdomyosarcoma.
The mass had grown to cover one whole side of his face and head under his skin. The cells grew aggressively, like tree branches. But there was still hope, and they clung to it. Tori read that Brody had a 70 per cent chance of surviving this beast.
To look at Tori, it’s hard to imagine the hell she’s lived through. She looks younger than 23, but when she speaks her demeanor and experiences are old, well beyond her years. She is laid back and thoughtful. When she tells the story of when her world started to crumble in late 2014, she speaks so eloquently and factual.
Her eyes light up when she talks about him—sometimes in the past tense, sometimes in present tense. He was mischievous and had his mom and his aunts wrapped around his little finger. Even though he was so young, he was well aware that he will sick. He spent so much of his young life in the hospital that he even learned how to administer his own medicine through the tube in his stomach.And though he spent countless hours in the hospital, he also had a ‘normal’ life too. There were many magical moments…Tinkertown. The Zoo. Playing at the park… He liked collecting toys and figures, and he was obsessed with clean. If there was an upside to being treated in isolation it was that Brody’s room was immaculate.
The little boy was special. He was feisty and so full of life, even when the cancer started to steal him.
This June 19 he would be turning five-years-old. It will be a hard day for the Grühn and Birrell family, but rather spending a somber day mourning for the little boy who will eternally be three, they will be celebrating in his honour, and hoping to give joy to other kids fighting cancer.
His family (The Team Brody Foundation) will hold Brody's 5th Birthday & Toy Drive at the Earl Grey Community Centre where Tori works. There will be pizza and cake and games for kids. There will be family, friends, and hopefully even strangers who want to help celebrate this special little boy with the big legacy.
It’s an open invite from a family who seem to quickly embrace strangers as new friends.
“Toys aren’t everything, but when Brody got a new toy while he was in treatment it always made him really happy,” she explained. “You don’t always know what’s going to happen, so I say spoil the crap out of your kids.”
“I wish I had spoiled him more,” Sheena said.
Tori, Sheena and the rest of Team Brody Foundation will hand deliver all the toys and donations to the children and teenagers at CancerCare themselves. They beam when they describe doing it last year.
“You’ve got these kids who are going through a lot and to be able to go in there, and give them something that will make their day and their treatment that much better is really awesome. When we dropped off the toys last year, the kids were so happy.”
“Nobody out there does what we do. All of the money we raise goes directly to the families for things like parking, or food, or even just for peace of mind so they don’t have to worry about money for a few days while they’re going through this,” explained Sheena.
Even more than the money, they offer support to families with children who are fighting childhood cancer.
“The biggest thing about having us around is that we know what you’re going through. When people tell you that they can’t imagine what you’re going through, we can because we know.”
This fall Tori is enrolled in the University of Manitoba. She hopes to become a pediatric nurse because knows that her experience can help others who are going through the same thing. She also feels at home in the CancerCare ward, where she spent so much time with her little boy.
“It’s home for me, I love going there,” she said as we wrapped up our conversation.
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