May is Brain Tumour Awareness Month.
Every day, 27 Canadians are informed they have a brain tumour.
Through social media avenues such as #TurnMayGrey, the Brain Tumour Foundation of Canada seeks to raise awareness of brain tumours and the need to raise funds for brain tumour research.
Two Sault women who have faced the ordeal of being diagnosed with a brain tumour (one having survived, the other faced with having a tumour) now have a desire to help others who find themselves in the same life-threatening condition.
Kyleigh Provenzano and Shaylan Spurway Bubinas, working together as co-captains of their Brain Stormers fundraising team, plan to walk 27 kilometres (in honour of those diagnosed daily in Canada with a brain tumour) on June 27, beginning at Laird Hill, do a pit stop at Pine Island and continue to Provenzano’s family camp on St. Joseph Island.
They will be joined by family members, friends and other socially distanced brain tumour warriors.
The two women will be met and joined for a short stint toward the end of their journey by Provenzano’s husband (Sault Mayor Christian Provenzano, along with their three daughters Chloe, Isla and Alice) near the Provenzano family camp, where, it is hoped, a barbecue will follow (depending on where COVID-19 restrictions stand June 27).
Last year, Kyleigh Provenzano’s fundraising team won the Brain Tumour Foundation of Canada’s Cup of Hope for collecting over $38,000 in donations for research in the 2020 Virtual Brain Tumour Walk.
Provenzano and Spurway Bubinas have also formed a social media presence through #AlgomaGoesGrey.
“I’m really looking forward to it,” Provenzano told SooToday in anticipation of the June 27 walk.
“This year we decided ‘let’s walk together.’ I was really inspired by her,” said Provenzano of Spurway Bubinas, after learning of her 27 kilometre walk last year.
“I texted her...and she planned out the route. I’m going to have to start walking and training a little bit for this,” Provenzano said with a chuckle.
“I have this theory that everything that’s important isn’t easy. It’s usually the things that are most important that are difficult. Walking 27 kilometres is going to be difficult...but I think it’s such a big gesture that people are going to notice it.”
“It was October 2019 when I was diagnosed. My youngest daughter was about four months old. I was losing my train of thought. I couldn’t form sentences in my mind. I couldn’t think of the words. The words weren’t coming through,” Provenzano said.
Currently keeping an eye on her situation with regular MRIs (every three months at first, now every six months), Provenzano said “things are stable right now. We’re just watching and monitoring it because it’s in too dangerous of a spot to take out.”
Surgery, Provenzano said, could result in a permanent or transient speech disability.
“I didn’t know what to do (upon receiving her diagnosis)...and then things got a little bit easier over time as I started talking to more people, as I started learning more about it, and when I connected with more people within the brain tumour community, that gave me a lot of strength.”
“Also, for my kids, I thought to myself ‘what do my kids, my husband and my family deserve?’” Provenzano said, deciding to be strong and brave for her loved ones.
Shaylan Spurway Bubinas is a professional photographer and marketing coordinator for Community First (a division of Your Neighbourhood Credit Union, or YNCU).
She was diagnosed with a brain tumour during a visit to Sault Area Hospital (SAH) emergency department Feb. 9, 2016.
“I was experiencing a headache. I’ve lived with headaches my whole life and this headache was different. I knew it wasn’t just a migraine. Within a couple of weeks I finally got the news that I in fact had a brain tumour,” she told SooToday.
After the initial shock of being diagnosed with a brain tumour, Spurway Bubinas said she went into survival mode.
Originally advised to go for a consultation in Sudbury (for which there was a two month wait), Spurway Bubinas instead headed to Trillium Health Partners - Mississauga Hospital for surgery in March of that year.
“My surgeon (Dr. Hui Li), I call him my hero. It ended up being a different type of tumour that I was originally diagnosed with. There are over 120 different types of brain tumours and mine was a very rapidly growing one. It was extremely close to my spinal cord. Had I waited until later in March for that consult in Sudbury, my surgeon said I more than likely would have been paralysed from the neck down.”
“We (she and her mother) left the consult (in Mississauga) and we were driving home on the 401 and he called me and he said ‘we’re not waiting, can you come back?’ He did my surgery four days later (March 4, 2016)...that’s why he’s my hero.”
Brain surgery performed on Spurway Bubinas lasted seven hours.
“I was in the hospital for recovery for a week. I was put right out with a paralytic (necessary for the operation she went through), so I had to do physiotherapy to start walking again.”
“I was in fighting mode but I definitely had my moments,” Spurway Bubinas said, recalling the surgery and post-op physiotherapy, her full recovery taking about six weeks to complete.
“I go for an MRI every year. In March of this year I had another clear scan. Things are good. I’m very lucky.”
“I want to use the fact that I’m a survivor to help the other warriors out there who are still fighting it. I have made amazing friends through the Brain Tumour Foundation of Canada (such as Provenzano) which I discovered after my surgery, including ladies locally who are living right now with a brain tumour. I want to use my story to help others and just keep raising awareness.”
“Last year, Kyleigh and I met through the Foundation and we wanted to bring a walk to Sault Ste. Marie (to raise funds for brain tumour research) because there was nothing up here in the north. Then COVID came into play and changed our plans. It became virtual. We all had to walk on our own but we still promoted it as the Sault Ste. Marie walk.”
“I had a team and Kyleigh had a team but we worked together.”
“We had an amazing outpouring of photos and messages and people wearing grey, some people ordering #AlgomaGoesGrey T-shirts. Then we did the walk on June 27th,” Spurway Bubinas said.
“I did it all at once,” Spurway Bubinas said, recalling her 27 kilometre trek in 2020.
“It took me about six hours. My husband did it with me. We had purchased a camp late in 2019 out by Pine Island... (coincidentally) it’s exactly 27 kilometres from our cottage to my parents’ house (near Desbarats). When we got to the end of the driveway my friends and family were all socially distanced in the yard, wearing grey, cheering us on for that last half a kilometre.”
Shaylan Spurway Bubinas’ story and call for brain tumour research funds may be found online.
Kyleigh Provenzano’s story and appeal for research funds may also be found online.
Donations may be made to the Canadian Brain Tumour Foundation on its website.
“Brain cancer is the deadliest type of cancer that you can have. There is a five per cent, five year survival rate and it unfortunately is the most under funded. It’s really important that people do a push for this fundraising. We need a breakthrough. The last breakthrough in brain cancer research was in 2005. So, we’re due. There seems to be a lot of good things coming up, but we just need to do fundraising, so we can help people get there,” Provenzano said.
Do the two warrior women have any advice for others facing the ordeal of a brain tumour diagnosis and treatment?
“To keep fighting, to not give up and to trust your gut above all else. We know our bodies the best, and if we can sense something is wrong, you’ve got to fight for that,” Spurway Bubinas said.
“I would say just remain hopeful and remain positive. I really believe that staying positive is half the battle,” Provenzano said, adding she has good days and bad days (most of them good) with medication.
“There are so many new (clinical) trials and upcoming treatments that seem promising, and people just need to know they are not alone. I’m a big believer that the more I talked about it, the better I felt. I reached out to people who actually have these types of tumours, and it’s reassuring in a way. You’re not alone. There’s always someone out there who’s going to support you,” Provenzano said.