'All I could think was, these girls might not remember me!' Why Kyleigh Provenzano is a brain tumour warrior

It was last August when Kyleigh Provenzano, then 29 years old and mother to three beautiful daughters, first suspected something might be amiss.

She was preparing to attend a function at Quattro with her husband of four years, Sault Ste. Marie Mayor Christian Provenzano.

"He was ready, so he went downstairs to let me finish getting ready while he watched all three kids," she remembers.

"All of a sudden, my thoughts were gone. I couldn't form sentences in my mind. I couldn't think straight. It lasted for 30 to 45 seconds maybe. I kind of gave my head a shake and it went away."

"It was weird," she called to her husband downstairs.

"I just lost my train of thought there. Just give me a little bit," she told him.

"I want to sit down for a second and make sure that I feel okay. I might be a couple minutes late. So just sit tight. I'll be right down."

"No problem," the mayor replied. "You just take your time."

Kyleigh figured it was probably a mom thing. 

The couple's third child, Alice, had arrived just five months earlier.

"I chalked it up to being tired, because at that point the baby . . . really wasn't sleeping well. I remember the night before, it was a tough night. She was up a lot," Kyleigh recalls.

But then the same thing happened to her a few weeks later.

Kyleigh was between doctors at the time.

Her family physician had recenty retired.

She wasn't sure what to do, and Christian suggested she call her aunt, a doctor in Toronto.

Kyleigh did that.

"What do you think it it is?" she asked. "I think I'm just a tired mom. I'm overworked. I'm stressed and I don't sleep."

"Just go to emerg," her physician-aunt advised.

"Even if they look at you like you're crazy, tell them that you were sent by a doctor. I'm sending you as a doctor, not as you being my niece."

"I went up and they did a CAT scan and they found a lesion and they sent me for an MRI," Kyleigh tells SooToday.

"I didn't get the MRI results until October. I had a new family doctor and she gave me the results."

And thus began the most difficult month of Kyleigh's life.

Her new physician, Dr. Patricia Bouchard, informed her she had a tumour in her brain's language centre, responsible for speech processing and production. 

The former star athlete on the St. Mary's Knights volleyball and basketball teams, the former Jazz Aviation customer service agent whose reassuring smile greeted passengers arriving at Sault Ste. Marie Airport, was now tormented by thoughts she might not be there for her family.

"I couldn't stop thinking about my girls. They were all under age four at the time of my diagnosis. All I could think was, oh my goodness, these girls might not remember me."

"It's going to affect my speech and I'm nervous about that," Kyleigh told her closest friends. "What if I'm never able to speak properly any more?"

Her friends knew her better than that.

"My friends would say to me: 'You're a talker. And it's going to take a lot more than a tumour to keep you from speaking.' With my friends saying that, I thought, you're right. I've got a voice and I've got a strong voice. I'm going to do what I can to use it to make a difference."

The turning-point came as Kyleigh began to connect with brain-tumour survivors, both here in the Sault and elsewhere in Ontario.

"My best friend hooked me up with someone that she knows with a brain tumour. Her name is Shelby Kerns. Shelby completely changed my attitude. She introduced me to the power of positivity and how I need it and how it'll be so important for my care and my treatment. Since meeting her and all these other people that have brain tumours, we support each other and we help keep each other strong and it's a really amazing thing for me."

Kyleigh also connected with the Sault's Shaylan Spurway Bubinas, who was diagnosed in 2016 with a giant cell tumour on the base of her brain; and with Danielle Froio King, a teacher in East Gwillimbury, Ontario who has lived for years with an aggressive recurrent brain tumour and has raised thousands of dollars for the Brain Tumour Foundation of Canada.

Right now, Kyleigh says she doesn't have a lot of persistent symptoms.

"The tumour itself is not small, but it's stable. I think I'm pretty lucky to have caught it . . . Maybe every once in a while I'll get a headache. Maybe half a dozen times I've lost my train of thought. That's it. It doesn't take a lot of management because it's brief. It comes and goes pretty quickly and I'm just back to where I was before."

"Specific words sometimes don't come through. It's almost like it's blocked. It's a bit frustrating when you're trying to communicate with people. I was out for lunch one day with a friend of mine and we were talking and all of a sudden I just completely stopped talking. I said: 'I don't remember what we're talking about. Sorry, remind me so I can start over.'"

She also experiences confusion.

"Not like confused like 'where am I?' or 'who am I?' More like confused about the words that are coming through."

Kyleigh's neurosurgeon is Dr Gelareh Zadeh at Toronto Western Hospital, but surgery isn't in the cards right now.

Her tumour is in a sensitive spot, she says, where removal could leave her with a permanent or transient speech disability.

"The tumour itself seems to be stable. I go for MRIs every three months to monitor the growth. As soon as it starts changing – growing or if it looks like there are any kind of changes in it – that's when we make the decision to go in. RIght now, we're just monitoring it and we'll go in when we have to."

"The sooner you catch this specific type, the better . . . I'm so thankful for my aunt. I wouldn't have gone to emerg if it wasn't for my aunt. I truly believe that to this day I wouldn't know I have this if it wasn't for her."

Earlier this year, Kyleigh was trying to organize a May 2 fundraising walk in Sault Ste. Marie for the Brain Tumour Foundation of Canada.

Like countless other events across the province, those plans were derailed by the COVID-19 emergency restrictions.

She contacted the foundation and was advised it was organizing a national virtual walk on June 27.

Kyleigh jumped at the chance to organize a Sault version of that event.

To sign up and sponsor Kyleigh or other members of her Brain Stormers team in the virtual walk, please click here.

Kyleigh is also working with Spurway Bubinas in an effort to persuade everyone in Algoma to wear something grey (the colour of the brain tumour awareness ribbon) one month earlier on May 27.

"The reason why the 27th is picked for the walk and then for our day as well, is that they say that 27 Canadians will hear every day that they have a brain tumour," she says.

"We're going to use the hashtag, #algomagoesgrey."

"It's a really negative thing that I'm going through, but it doesn't have to define me as negative. I can turn it into a positive and that's what I'm trying to do. If I can help just one other person, then I'm happy."