Breanna Johnson had a simple assignment at school. Research a part of the brain and present it to the class. She asked her nurse mother Margot for help, and the 15-year old chose to focus on the temporal lobe. That was in April this year. Days later her healthy 51-year old father Stephen would be diagnosed with stage four brain cancer in the temporal lobe after going to hospital following a car accident. Breanna and Stephen Johnson Photo: Supplied “I had two hats on; my nursing hat on and my wife hat,” Stephen’s wife Margot recalled upon hearing the news. “When my nursing hat’s on, I realistically know what can happen, and when my wife’s hat is on, it’s got all the hope and positivity that you can muster.”Stephen was diagnosed with stage four unmethylated glioblastoma, a rare and aggressive form of brain cancer. For Margot, the news was shattering as she knew the prognosis all too well. Revolutionary trial: Stephen, seen here with wife Margot, is undergoing a new trial to treat his rare form of brain cancer. Photo: Mark Jesser “My husband has the worst sort of brain cancer he could have so it was pretty shocking,” she said.Brain cancer can have a dementia-like effect on the sufferer. Memory problems are common and it can lead to disorientation, confusion and depression.
“I’m very mixed up and slow, and sometimes a bit like a big jigsaw puzzle,” Stephen explained from his home in Rosewhite in regional Victoria. “All mixed up. But I’m feeling good right now and I know I can put it all back together. “It’s going to take lots of challenges down the road, but I know I can fight it and with all the support and love around me, I’ll get there.” Still smiling: Stephen is taking the fight head-on. Photo: Mark Jesser The rarity of the cancer provided Stephen with one ray of hope in his struggle with the disease. A new national trial, led by Mustafa Khasraw from the Royal North Shore Hospital, is targeting unmethylated glioblastoma, which has a prognosis of 12 months, compared to methylated glioblastoma, which is almost double.”Having no methylation of the glioblastoma means more patients die in a year,” Khasraw explains. “What we’re trying to do is give the standard radiotherapy treatment, but instead of the chemotherapy that has been largely disappointing in this group, give them a new drug that has shown promise in other cancers.” Dr. Mustafa Khasraw is the principle investigator on the revolutionary trial. Photo: Cure Brain Cancer Foundation The study is being conducted by the Co-Operative Trials Group for Neuro-Oncology and the National Health and Medical Research Council with support from the University of Sydney.In addition to surgery, chemotherapy and radiotherapy, Stephen takes the experimental drug Veliparib. The growth of the tumour has slowed since he started treatment, and although it’s too early to directly link this to the trial, Margot is certain it’s the cause of the success. Gaby and David Wolf in Israel after he was diagnosed with brain cancer. Photo: Gaby Wolf “Without the trial, I don’t know where Steve would be in the next year,” she says. “From my nursing perspective, these things go fast and the fact that standard brain cancer treatments don’t work very well on these particular ones, it would’ve only been a matter of time.” The trial is largely funded by the Cure Brain Cancer Foundation, an umbrella organisation founded by neurosurgeon Charlie Teo, as well as the NSW Cancer Council and pharmaceutical researcher AbbVie.The Cure Brain Cancer Foundation is supported by smaller subsidiary charities, including the The Wolfy Foundation.David Wolf was 22-years old when he was diagnosed with stage four brain cancer. He died less than a year later. His friends and family established the The Wolfy Foundation to help others affected by brain cancer. Together with Cure Brain Cancer, they raised $250,000 at their spring ball at the start of October, which goes directly to the trial keeping Stephen alive. “For me and my parents, the spring ball allows us to honour my brother’s legacy by celebrating life the way he did,” sister Gaby explained. “David had a gift of bringing people together. He had more friends than anyone I know and he treated everyone equally, regardless of their age and background.”
The founders of the Wolfy Foundatio…