No family should have to watch their child walk like a soldier to the battlefront of cancer.Mary-Ann, Giulia's mum
Seven-year-old Giulia was an ordinary, healthy, happy little girl. She loved dancing, playing dress-ups and spending time with her beloved Nonna. But inside, Giulia was anything but ordinary. A deadly and incredibly rare sarcoma called Inflammatory Myofibralstic Tumour (IMT) was silently taking hold in her chest.
One of the most frightening things about childhood cancer is how stealthy it can be. In Giulia’s case, there were virtually no signs at all, just a sudden and unexplained lethargy. After a couple of days off school, her mother, Mary-Ann took her to the GP, where blood tests revealed Giulia was bleeding internally. From that moment, everything changed.
Giulia was rushed off to her local hospital and then to Sydney Children’s Hospital, Randwick. There, her heart rate soared so high doctors needed to perform immediate heart surgery to remove fluid on her heart before it stopped beating. But worse was to come. The surgeons discovered a tumour in Giulia’s lungs was putting pressure on her heart. Giulia was diagnosed with a rare cancer known as IMT sarcoma.
IMT sarcoma is a lethal cancer. We know very little about what causes it and the large position of the tumours – often in the chest or the abdomen, which make surgery difficult. In highly aggressive cases, it is almost 100% fatal.
“I remember that awful moment when an army of doctors brought us into another room to give us her diagnosis. It felt surreal.”
24 hour bedside vigil
Giulia’s parents, Mary-Ann and Robert were absolutely at the mercy of this terrifying disease that was devastating their child. Family life changed in an instant. Day and night they sat by Giulia’s bedside. Mary-Ann stopped working altogether as the family adapted to their new 24-hour bedside vigil. Giulia’s older brother Luke was left in the care of relatives as his parents switched to survival mode and poured every ounce of their energy into caring for their daughter.
“I remember when she was in Intensive Care and had tubes coming out of everywhere and she looked up at me with a little tear rolling down her pale face and said, ‘Mummy, am I going to die?’”
The challenge for our research is that IMT sarcoma is exceptionally rare. For Giulia there was hope. She was given a chemotherapy treatment that included an ALK-inhibitor – a drug that our researchers had seen work in other patients. She has responded well to her treatment so far, but with IMT sarcoma, there are no guarantees.
Children’s Cancer Institute is leading the world in IMT sarcoma research. We are the only research institute to have live cell models of IMT, which means we are the only ones looking for new treatments through drug testing.
Children with IMT sarcomas can become resistant to current treatments. We need to find answers for better treatment options should a child like Giulia relapse.
After months of blood tests, PET scans and CT scans, the drugs had shrunk Giulia’s tumour enough to operate. Mary-Ann and Robert knew it would be high-risk, and watched every second tick by as their precious daughter lay just a few metres away under the skillful hands of the surgeons.
“The operation was the longest six hours of my life. When the surgeon came out with a smile on his face I just wanted to hug him – thank you just didn’t seem enough.”
I’m pleased to say that Giulia has responded well to her treatment so far. Today, she has been in remission for two years. But with IMT sarcoma, there are no guarantees.
Giulia confessed recently that her deepest fear is her tumour coming back. I have reassured her that if it does her doctor and all his researchers are doing everything in their power to help find a cure for it.