Patient stories

The VPCC is supported by a Patient and Family Advisory Committee who inform and advise on VPCC research programs using the expertise they’ve developed through lived experience of paediatric cancer. These stories are just some of the experiences of the patients and families who are supporting the VPCC with their time and effort.

Elias’s story

Elias was diagnosed with rhabdomyosarcoma in his bladder at just 16 months old. It started with what his mum Nelly suspected on Monday was a simple bladder infection, but he got sicker and then Nelly found a lump on Thursday when she was changing his nappy. On Sunday, Elias was diagnosed and he started chemo the very next day.

Because of the location of the tumours, Elias he was faced with radiation at Peter Mac that could have destroyed his pelvis and everything in that area. Nelly and Elias went to Westmead in Sydney where they could get more targeted radiation via surgically placed rods. Westmead is the only place in Australia that offered that service in 2018.

Elias was on chemo for 501 days, he developed aversion to food and lost a lot of weight. He’s now doing really well with no apparent developmental delays or other ill effects and having follow up scans at the Monash Children’s Hospital every four months.

Elias Mohibi
Evie Rubinek

Evie’s story

Evie turns 3 in 2022. In 2020, after months of her parents searching for answers, she was diagnosed with a choroid plexus carcinoma at 13 months old and rushed to surgery.

Her mum Lori went from being a junior doctor in the oncology unit to a mum of a child with cancer. Lori and her husband have searched worldwide to find options for Evie’s 1 in 3 million tumour.

In her life so far, Evie’s had three rounds of standard chemo and another three of high-dose chemo, plus stem cell therapy. The family also had rapid genomic sequencing at the Monash Children’s Hospital to rule out a genetic link being behind Evie’s rare cancer.

In the winter of 2021, Evie went home from the hospital with mum and dad and the family have now welcomed a baby brother for Evie too.

Gideon and Rebecca’s story

As the eldest of three, Gideon was relishing his role as a big brother when, at the age of eight, he was diagnosed with glioblastoma, a rare and aggressive brain tumour.

The diagnosis meant the family were quickly plunged into the world of cancer treatment as Gideon went into surgery within a week, followed by radiotherapy and a clinical trial for a medication. When the surgery and radiation failed, the clinical trial medications were all the treatment that was left. Gideon was able to return to school with his classmates for short periods, but after six months his health deteriorated.

Twelve months from diagnosis, Gideon died at the age of nine. Gideon was a gorgeous, funny and gentle boy, devoted to his siblings and family. He loved going to school, loved all things cookie-monster related and entertained everyone with his quirky sense of humour and fantastic memory.

Gideon’s mum is part of the VPCC Patient and Family Advisory Committee because she’s passionate about supporting research that could improve outcomes for kids with brain tumours.

Ron Firestein
Prof David Eisenstat

Claire’s story

In year 8, Claire was diagnosed with acute lymphoblastic leukaemia (known as ALL) and now at 19, is officially cancer free. However, the treatments that got Claire to that status have taken a serious toll. The steroids that she needed to take meant that she has had to have a hip replacement, has to take hormones to protect her fertility, and suffered some cognitive impairment after chemotherapy and a long stay in intensive care. Despite these challenges, Claire started at university in 2022.

She’s also passionate about helping other young people to come out of cancer treatment the best way they can, and the VPCC’s research into cancer survivorship is important to her. As someone with a passion for science, she’s eager to be part of the story. It’s one of her motivations for being part of the VPCC Patient and Family Advisory Committee and playing a part in the future of scientific research.

Alex’s story

By the end of 2020, many of us were looking forward to a break after a tumultuous year, but for Alex’s family there was more to come. In December, at just six years old, he was diagnosed with a high risk rhabdomyosarcoma, a type of cancer that starts in the body’s soft tissue, including the muscles, tendons and bones. It’s the most common sort of soft-tissue cancer in children. As part of his treatment, Alex had to have surgery, more than three weeks of radiation and nine cycles of chemotherapy. At the end of all that, his treating team have said that he’s in remission. It means that for Alex, his little brother Oliver and mum and dad, the 2021 festive season was a happier one.

As part of the VPCC Patient and Family Advisory Committee, Alex’s mum Courtney sees great value in using her lived experience in paediatric cancer to help influence the way that future research into paediatric cancer is created and delivered.

Ron Firestein
Prof David Eisenstat

Raya’s story

Raya was diagnosed with B-cell acute lymphoblastic leukaemia (known as B-ALL) when she was 11 and now, at 12 is officially in remission. It’s been a frightening whirlwind for her, her dad Nader, mum Hanaa and her little brother Zain. Raya experienced chorea, which is involuntary movement, as part of her cancer. Choreas originate in the basal ganglia, the part of our brain that controls the way we move. The impact of her treatment is still unknown, though she is looking forward to being able to return to school and continue her studies.

Nader and Hanaa recognise that cutting-edge cancer treatments developed through research played a big role in helping Raya to get through her cancer, and that research into cancer survivorship will be important for helping her to live her best possible life after treatment. For them, supporting research into childhood cancer is a big motivation for being part of the VPCC Patient and Family Advisory Committee.