Simon’s journey with brain cancer was devastatingly swift, yet his warmth, courage, and love for his family left a lasting impact that can’t be measured in words. Only a week after his diagnosis, Simon’s wife Heidi shared their story with the Mark Hughes Foundation, holding onto hope amidst the shock and grief. Just one week later, Simon was gone.
Simon was a beautiful 53-year-old (a young 53) who was always trying to be healthy and stay fit. He was a friend to all, and everyone always loved “Simo.” As a boy, he supported St George, but that changed once the Knights started in Newcastle. He always went to a few games each season with his mates, and this year we wanted to go as a family to support a family friend playing for the Knights, but Simo’s health was just not good.
You see, Simo had been struggling with Lyme Disease for the past three years and had been trying everything to get rid of it. It was getting worse, so we started to look into treatment over in Germany, but it is very expensive. Now we know those changes we started to see mid-year were probably the brain cancer.
Simo was a surfer; he loved the beach, and if he wasn’t in the water at least once a week it became evident that he needed his saltwater fix. His favourite breaks were Bar Reef and Nobby’s Reef. His favourite surfers were Mark Richards, Mark Occhilupo, Owen Wright, Jack Robinson, Mick Fanning, and Kelly Slater. We had been going to Rainbow Bay (near Snapper Rocks surf break) over the past four Easters. Simo was stoked to see Mick Fanning and Kelly Slater out in the surf and to meet Occy, who actually lives in the apartment building we stayed in. Occy was always up for a chat, and Simo was so excited that he got to introduce our son to one of the best surfers of all time.
Simon was an amazing husband and father to our 10-year-old son, Newton. Newton adores his father, and Simon was born to be a dad. Simon was always outside playing soccer, on the trampoline, or in the spa playing with his little Newty Boy! The saddest part about all of this is that Newton’s world has been completely shattered and changed forever, and it breaks our hearts. We tried to protect Newton by keeping life as normal as possible. He knew Daddy was finding it difficult to find the right words to say (his tumour was in his front left lobe) and that doctors had done tests on his head to find the right medicine for him. We never thought he would be gone before he could even start radiation or chemotherapy.
Simo was always a loving and supportive partner and husband. We have been together 20 years and married for 12 years. In 2016, I decided to retrain and started a Masters of Education to become a Primary School Teacher. He was so supportive during this time when I was studying, especially as Newton was so young. In Term 2, 2019, I was doing my final practicum for my Masters and on 12th June (my mum’s birthday), our lives were derailed with the news that I had breast cancer — the nastiest and most aggressive type there is, Triple Negative Breast Cancer.
Just when life was meant to start to get easier, I had to have surgery, chemotherapy, and radiation. I tried to keep things as normal as possible and even worked while on chemo, much to my oncologist’s annoyance, as I needed to know that I could be a teacher prior to graduating that August. I then started casual teaching while I was doing radiation. I don’t know how I would have gotten through it without Simon.
I am now nearly five years post my treatments, and I will never forget when my surgeon said to me, "If you hadn’t found this early you would have been dead by 50." This still sits with me, especially now with Simo’s diagnosis — if I hadn’t caught it early, I hate to think what the outcome might have been for our son Newton.
Simon was a Geologist by trade and had worked in mines in NSW and WA. He worked for the NSW Department of Planning and Environment since 2005. He started in the Mine Subsidence Board, moved over to Minerals and Geological Survey, and later decided he wanted to get out of mining, so he moved to Fisheries and was working as a Senior Project Officer in Water Assessments.
He was still working the morning before we went to the GP on Tuesday 8th October and was reluctant to go as he had so much on at work, helping to cover while his manager was on leave. Who knew life could change so quickly after a 9:30 am GP appointment and then a 12:30 pm CT scan before being told that we needed to go to the John Hunter Hospital immediately?
The neurosurgeons thought it was a GBM, Grade 4 (a frozen section was taken on Friday 11th October during a biopsy). They said it was too risky to try to operate to resect some of the tumour as it might leave him with more deficits, like weakness in his right side or personality changes. We were holding onto the hope that radiation, chemo, and Avastin might start to reduce the tumour (5x4x3cm) and help Simon get back to how he was.
Once the pathology came back confirmed as a GBM Grade 4, we went to the medical and radiation oncologists and a treatment plan was in place. We were hopeful of getting Simon past Christmas this year, but the tumour was just too aggressive and took his life after just 20 days of fighting this beast.
Everything now feels very surreal, and we can’t process that Simon is gone. We couldn’t have navigated this journey without the wonderful MHF nurses, Elisha and Sandy — two amazing people who we will forever be so grateful for. We will continue to raise money and fight for a cure alongside the Mark Hughes Foundation, and we will not give up until a cure is found.
