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.
I was 14 when I entered the world of hospitals, chemotherapy and cancer. I never imagined that my life would change so drastically, in an instant, but it did. I was lucky to be diagnosed with a relatively “curable” cancer – Acute Lymphoblastic Leukemia. That being said, the almost 3-year treatment scarred my mind, body and spirit. Hours of chemotherapy and hospital stays crushed my self-confidence, created medical anxieties and forever changed my relationships with others and myself. Nausea, pain and hair loss were the hallmark side effects of my journey, but the inability to attend school, play sport and socialise was equally devastating. I finished treatment for my leukaemia just before my 17th birthday, celebrating with a big party, accepting university offers and traveling the world.
Only a couple of years later, my cancer returned as a tumour.
As a young adult, I fought again in both paediatric and adult settings, re-living my trauma and facing my diagnosis alone – COVID lockdowns & being a year over 18 meaning that I could not always have my family there to support me. I had radiotherapy for the first time, more chemotherapy and many hospital stays. This time, with a significantly lesser chance of long-term survival. Luckily, I finished this battle in 2021 and have been cancer free since!
At 9 years of age and in grade 3 at St Joseph’s Primary School, Warrnambool, Pippa Rea was the youngest of 3 in her family of her mum, Virginia and 2 older brothers, James and Patrick. Pippa was a natural leader and playground mediator. She was everyone’s friend and confidant, excelling both in the classroom and sport. She played tennis, netball, basketball, did gymnastics and took swimming lessons. In April Pippa won every event in the school sports carnival. In June she lost the ability to smile on the left side of her face and her left eye stopped moving. She presented at RCH with a Diffuse Intrinsic Pontine Glioma, (DIPG) never able to win a running race again.
A DIPG grows within the brainstem, cannot be removed and has no cure. It is embedded amongst the 12 cranial nerves that control every essential function to our body – sight, hearing, cognitive movement, breathing, swallowing… DIPG is usually only found in children aged 5-9 and the average survival is 6-12 months.
Pippa and Virginia moved to Melbourne to live separately and 3 hours away from James and Patrick whilst Pippa underwent 7 weeks of adult strength radiation therapy, steroids and daily low dose oral chemotherapy. After which, returning to Warrnambool and school, the new routine often became weekly visits to RCH for appointments, tests, MRIs and to collect monthly chemo drugs to be given orally at home.
In September 2014, the tumour could no longer be held at bay and Virginia, James and Patrick took Pippa on her dream trip to visit Paris and see the Eiffel Tower. Pippa passed away at home in the arms of her mum and brothers on the 28th March 2015 aged 11.
Post mortem, Virginia, James and Patrick donated the tumour from within Pippa’s brainstem to the RCH Biobank resulting in the first DIPG cell line to be banked. Virginia now sits on the VPCC Parent Advisory Committee as an advocate for research into DIPG; the most complex and incurable of all cancers in adults or children.
It was ‘Bring a lunchbox’ day at kinder, and while enjoying his lovingly prepared snack, 3 year old Luca became sick. To his horror – and that of all the kids and staff around him– he had what was later described as a sudden and graphic vomit.
After days of complaining that his ‘forehead’ hurt, two trips to the GP, rest, hydrolytes, mild vomiting, it was during a playdate, when this energetic kid could just no longer run, and came to us crying with a sore head, that we knew something more alarming was going on, and visited the RCH ED the next morning.
On December 10, 2018, still in the ED, a scan revealed a mass in Luca’s brain. This was just the start.
The list of treatments and procedures he underwent is extensive, and will continue throughout Luca’s childhood, and into his future. Many were distressing beyond words, but play room, Starlight room, kind and fun medical staff, toys, visitors, the connections he made with other kids on the ward and the constant love and attention he received from us, his parents, extended family and friends are the experiences that his talks about the most. He still gets excited when we visit RCH, and thankfully, the biggest challenge we currently face is getting him to leave.
On December 23, 2019, almost exactly one year after Luca’s diagnosis, he moved from treatment to monitoring. Fast forward to 2023, Luca is in Grade 2 and thriving. The obligatory ‘first day of school’ photo brings tears to his mum’s eyes. Mostly tears of deep gratitude and relief, with a sprinkling of fear, anxiety and probably trauma, remembering the year that followed that RCH visit, and how were told just days after that that he may not make it to this day, and that there will always be a chance of a recurrence.
We remain eternally grateful to the RCH, Peter Mac, and all of the people and organisations who support these hospitals, charities and the research behind this success story.
Elias was diagnosed with rhabdomyosarcoma in his prostate at just 14 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, Eli 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.
Now, he’s a happy grade one boy, running around with all the other kids. Scans still happen at least every six months, the threat hasn’t totally passed, but he’s living a pretty normal six-year old’s life.
Evie started kinder in 2023. Getting there has been a frightening road.
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.
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.
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.
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.
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.
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. Surveillance is ongoing though, scans and checkups happen every three months.
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.
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.