Emily Cooke’s brain cancer journey began nearly six years ago when she was just three years old. Peace of Mind connected Emily’s family with support worker Jonathan Muller, who has made a big difference in their lives. Now Emily is Peace of Mind’s Ambassador for Challenge Brain Cancer, an event that seeks to raise money to provide more brain cancer support workers like Jonathan. Allison and Jonathan spoke to Matt Hewson about Emily’s journey so far.
For many parents, being told their child has brain cancer is their worst nightmare.
For Allison Cooke, it became a terrifying reality in October 2018.
After years of health issues, appointments and tests to find out what was wrong with Emily, Allison and Liam Cooke were told their daughter had a lesion on her brain stem
Emily had glioblastoma, an aggressive and currently incurable form of brain cancer.
“It was really shocking, and for us it was just, what does this mean?” Allison said.
“What does this mean for Em’s future, what does this mean for our family’s future?
“The hardest space to sit in was one of the unknown. And it’s the same for all brain cancer families, it’s such an unknown space about what the future looks like.”
The Cookes engaged with Peace of Mind, a not-for-profit organisation that gives support to brain cancer patients and their families, in 2020.
Allison said Peace of Mind had a hugely positive impact on her family from the beginning.
“Peace of Mind are just amazing,” she said.
“Initially they provided us with financial support to do some small renovations, pay for parking costs and fuel, that kind of thing, which was great.
“And then they connected us with Jonathan.”
Jonathan Muller is a specialised brain cancer support worker employed by Peace of Mind who deals with anywhere up to 50 patients and their families at a time.
“Jonathan does a mix of things, but for us he’s an emotional resource and also a practical resource,” Allison said.
“The thing I love most about Jonathan is he sits outside her medical team. I can give him a call about what’s happening and how I’m feeling, and he’s invested in us as a family, as opposed to Emily’s medical treatment.
“He’s got a great relationship with Em. He takes her surfing with his dog Mudgee, he helps her with lots of things.
“He helps her with her emotional regulation, helps build her capacity, but more than that, he’s giving her fun, moments where her life is not about having cancer.”
Jonathan, who has a professional history as a nurse in palliative care, engaged with the Cookes shortly after beginning his role at Peace of Mind.
“My first contact with Emily was being over at their place and just mucking around with her,” he said.
“We just had fun and she was climbing all over me. I can be very serious when I need to be, but I’m also very good at just being a kid.
“That’s where I really try to engage Em, I just really try to get on her level.”
Jonathan said having his role sit outside the medical sphere allowed him to provide a different kind of care for Emily and the Cookes.
“Even though I’m a health professional, I try not to be in that space, particularly with young folk,” he said.
“And with Allison, my job is really about backing her up emotionally. I tend to be the person that takes the call when her back’s up against the wall or she’s feeling massive frustration or going ‘where to from here?’.
“One of the skills I bring is, what do you do when there are no options, when you can’t do anything? The health system’s really good at providing treatment and solutions, but so much brain cancer is unsolvable, untreatable.
“I try to reorient the focus on living, not so much on the next medical appointment or the next scan, because that can drive people crazy, particularly when it goes on for a reasonable period of time.”
Now, Emily is Peace of Mind’s Ambassador for Challenge Brain Cancer, an annual event to raise funds for and awareness of brain cancer, a disease that kills more children and adults under 40 than any other cancer.
Founder and CEO of Peace of Mind Foundation Rebecca Mallett said helping patients like Emily was the organisation’s mission statement.
“We’re the only organisation of its kind in Australia, supporting 700 families every year impacted by brain cancer that reach out to Peace of Mind for assistance,’ she said.
“Having Brain Cancer Support Workers nationwide is our ultimate goal, and we’ve seen firsthand the incredible impact that someone in this role has in providing hope, compassion and quality of life to our patients facing this very serious diagnosis.”
Challenge Brain Cancer will be held on February 25 at Westfield Geelong, where teams will compete in an Amazing Race event.
“The role of someone like Jonathan is really significant,” Allison said.
“I think it would have been a really lonely walk for us if Jonathan and Peace of Mind weren’t in the picture
“The reality for brain cancer is that only two out of every 10 people diagnosed survive past five years.
“Organisations like Peace of Mind are invaluable, and if the community can get behind them and help provide more support workers like Jonathan, it helps families like us immeasurably.”
To register a team for Challenge Brain Cancer or find out more go to peaceofmindfoundation.org.au/challenge-brain-cancer-2023.
