Lucy is one of a kind... so is her cancer.
15 March 2022. Lucy’s tumour was caught by chance, literally in the blink of an eye. It is every parent’s worst nightmare.
I’m Sarah, Lucy’s mum. Lucy was just 3 years old when I noticed a lump on her ribcage while dressing her for bed. At first glance, it looked like she had a broken rib, but the lack of bruising or tenderness had me feeling very uneasy. I remember thinking “This is not good”.
After a sleepless night and already fearing the worst, I took Lucy straight to our family doctor the next morning. From there, things moved very quickly and within a few hours we were on our way to Sydney Children’s Hospital, Randwick for further investigations.
A few days later we received the devastating news that Lucy had Ewing sarcoma, a rare and aggressive type of childhood cancer, with just 30% chance of survival.
The words hit like a bullet, shattering us into a million pieces.
Because of Lucy’s poor prognosis, she was eligible for the Zero Childhood Cancer Program (known as ‘ZERO’), which is a personalised medicine program for children in Australia.
The aggressive nature of Lucy’s disease meant she needed to start chemotherapy straight away. There was no time to recover from the shock of diagnosis, or rearrange our lives to fit in cancer.
Meanwhile, Lucy’s biopsy was already being genomically analysed by the ZERO team, with the hope that they would discover a targeted therapy for her.
The situation was completely out of our hands now, and our child’s life was hanging in the balance.
For the next 2 years our lives revolved solely around Lucy’s cancer treatment and hospital admissions. Treatment included five of the harshest chemotherapy drugs available: vincristine, doxorubicin, cyclophosphamide, ifosfamide and etoposide.
As Lucy’s little body struggled to survive through her aggressive chemo protocol, she was hospitalised repeatedly by dangerous side-effects. She suffered seizures, blood infections and life-threatening damage to her heart and lungs. She was on morphine, ketamine, oxygen support and every type of antibiotic you could think of.
Despite the horrors of chemo, Lucy’s scans showed that her cancer was responding extremely well to treatment.
Her tumour was shrinking and the cancer cells in her lungs were gone. Incredibly, Lucy was defying the odds that were stacked so heavily against her.
Although things were looking good, Lucy still needed to complete her aggressive treatment protocol - more chemotherapy, surgery and radiation. We hoped that she would also tolerate an extra 6 months of maintenance chemo at the end of all this.
Lucy had a very long road ahead, but we continued to limp slowly towards the finish line.
As a result of the treatment needed to save her life, Lucy endured severe side effects, including bacterial, fungal and blood infections, seizures and life-threatening damage to her heart and lungs. This is usually where the treatment options for a child with Ewing sarcoma would end. But then the results from ZERO came through.
ZERO researchers had identified a drug that could target one of Lucy’s cancer genes. Due to their findings, we were able to include this medicine as part of Lucy’s maintenance protocol, with the hope that it will prevent her from relapsing.
Without access to ZERO’s precision medicine program, this is not something that would usually be considered for Lucy’s type of cancer.
We are so grateful that Lucy is able to benefit from the research that people like you have donated to in previous years.
Your donations really are giving kids the gift of life.
After almost 2 years of chemotherapy, Lucy achieved remission in October 2023 and rang the end-of-treatment bell.
Although chemo has finished and life is no longer as intense, Lucy’s journey is far from over. She is still being monitored closely for relapse and continues to suffer with serious side-effects from her treatment. It is likely that the fall-out from her diagnosis will last her whole lifetime.
Our daughter went through hell, and we were right there with her, but knowing that ZERO researchers were working shoulder-to-shoulder alongside our oncology team, to save her life, did provide some comfort. As I write this, the ZERO team are still working to find more treatment options for Lucy. If she relapses, they will need to save her life for the second time.
Today, ZERO is open to all children and adolescents diagnosed with cancer in Australia and the team behind ZERO are able to get results much faster than when Lucy was diagnosed. The process that took months for us, is now taking weeks - sometimes just days. This gives me hope that we are getting very close to finding more cures and kinder treatments for our children.
“If a child you love is diagnosed with cancer, you will need the research that is happening right now. Please give urgently to this life saving work. Children need research and the researchers need you.” – Sarah, Lucy’s mum.
Please click on the DONATE button to save more children like Lucy.
Together we will cure childhood cancer. It's not if, it's when.
