Lilli's Story: "Not so benign"

Lilli's Story: "Not so benign"

When Team Jack and Lil laced up their sneakers for the 2016 Toronto Brain Tumour Walk, it was the first time that team captain Lilli took part in the annual fundraiser. But for Lilli, who named the team after a “term of an endearment” she has for her own brain tumour and the popular Jack and Jill nursery rhyme, her inaugural Brain Tumour Walk was also a bittersweet occasion.

Lilli’s health troubles began in 2011 with frequent headaches, and ones that sometimes caused her so much pain she was sick to her stomach. When a friend, who happens to be a nurse, noticed Lilli’s migraines, she recommended Lilli get a CT scan, just to make sure everything was alright. 
 
After getting the CT scan done, her family doctor recommended Lilli get an MRI soon after, then soon after those results came in she was told to do yet another MRI but this time with contrast dye for better imaging. “I was almost excited,” remembers Lilli. “I just figured this was all part of the process and we were finally going to get a solution to my headaches.” Even though the scans showed abnormal findings, Lilli didn’t get to see a neuro specialist for several months. During this time, she was still having intense migraines and was understandably concerned about the unusual brain scan results. 
 
Lilli CampingFinally, in 2012, Lilli saw a neurologist, who performed standard tests to study her reflexes and motor skills, and he also reviewed her scan images. That’s when the doctor sat Lilli down to tell her some unexpected news: Lilli had a meningioma. Calling it a “benign brain tumour,” says Lilli, the doctor reassured her that she wouldn’t have to worry about the tumour in her lifetime since that type grows so slowly. He then recommended they take a “watch and wait” approach to Lilli’s brain tumour, monitoring it for any changes through regular MRIs since surgery wasn’t necessary. It turned out that Lilli’s migraines had nothing to do with the tumour and the neurologist suggested she reduce the stress in her life and consider changing her career.
 
Life moved forward but Lilli had to adjust to this new brain tumour diagnosis, and she chose to keep the news mostly to herself. Unfortunately, when a regularly scheduled scan in April 2015 showed that the mass had grown from 1.7cms to 2.7cms, Lilli’s neurologist referred her to a neurosurgeon and the reality of surgery became very apparent. Considering her treatment options – either radiation, which could cause cancer down the road, or an operation to try and remove the mass – Lilli and her health team decided that surgery was the best bet to tackle the tumour but to wait a little longer and monitor it for any other changes. 
 
After her most recent scan in spring 2016, Lilli’s results showed that the mass had continued to grow, now at 2.8cms, and Lilli’s neurosurgeon has given her the option to book a surgery date or to wait another year. And even though Lilli knows there are risks either way, she admits she isn’t ready for an operation and has chosen to continue to watch and wait until her next MRI in 2017.
 
Knowing that surgery is now impending and it’s more a matter of when, Lilli opened up to her loved ones and shared her diagnosis with them – five years after her first scan. “I almost felt like I’d been hiding this for so long, like I was ashamed,” explains Lilli. “But with an impending brain surgery, I felt like now was the time to tell people.” Lilli also started researching online and found the information on Brain Tumour Foundation of Canada’s website to be the best resource. She was able to connect with support groups and joined as many online groups and in-person meetings around the GTA as possible. “I couldn’t believe my doctors didn’t tell me all of these resources were available to me,” she says. “Now I make it a priority to tell anyone I meet about the Foundation and I even bring their handbooks into clinics. I’ve received great support and feel like I belong to a wonderful community of strong people who can lean on each other.”
 
That’s the very reason that Lilli and her team joined the Toronto Brain Tumour Walk in 2016 – to ensure that support and help is available to other people if they are diagnosed. “I didn’t know there was support out there for people like me, and I really didn’t think I needed it. But it turns out I did! We need to make this information easy to find, to make it readily available so that it’s well-known and credible, and everyone can find it. That’s my hope for the future.” 
 
 
Thank you Lilli for sharing your story and for joining the movement to end brain tumours.
The movement is stronger because of you.

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