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 extremely rare cancer was silently taking hold in her chest.
Symptoms
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, Mary-Ann took her to the GP, where blood tests revealed Giulia was bleeding internally. From that moment, everything changed.
Diagnosis
Giulia was rushed 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 that was putting pressure on her heart. Giulia was diagnosed with a rare cancer known as IMT sarcoma (inflammatory myofibralstic tumour).
I remember that awful moment when an army of doctors brought us into a room to give us the diagnosis. It felt surreal.
- Mary-Ann, Giulia's mum
Treatment
Giulia was given a treatment that included a targeted therapy called an ALK-inhibitor. Giulia’s parents, Mary-Ann and Robert, sat day and night by Giulia’s bedside, waiting to see how she would respond. 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.
Giulia was in Intensive Care and had tubes coming out of everywhere. She looked up at me with a little tear rolling down her pale face and said, "Mummy, am I going to die?"
- Mary-Ann, Giulia’s mum
Surgery
After a few months, the drugs had shrunk Giulia’s tumour enough to make surgery a viable option. Mary-Ann and Robert knew it would be high-risk. They watched every second tick by as their precious daughter lay just a few metres away under the skilful 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.
- Mary-Ann, Giulia’s mum
After treatment
After treatment was over, Giulia confessed to her mum that her deepest fear was the tumour coming back. Mary-Ann says she has reassured her that if it does, the doctors and all the researchers are doing everything in their power to help find a cure.
I’m pleased to say that Giulia has responded well to her treatment and is now in remission. However, with IMT sarcoma, there are no guarantees.
- Dr Toby Trahair, Paediatric Oncologist & Cancer Researcher
Today
June 2020 marked 5 years in remission for Giulia. She didn’t want to make a big deal of this momentous milestone, and so in true Giulia style, she had a quick lunch and went back to school to be with her friends.
Giulia has blossomed into a beautiful caring, resilient, social and happy teenager. She has never lost her spark or the twinkle in her eye. Giulia enjoys playing basketball for her school, cuddling up with her pooch, Luna, shopping, eating out, and hanging out with her gorgeous supportive friends. Having enjoyed with great happiness her family trips to America and Thailand, Giulia can’t wait for COVID to be a distant memory so she can explore other corners of the world with her family.
Giulia is surrounded by the most loving, supportive and affectionate family and friends. She is one tough cookie and nothing seems to faze her, but despite reaching 5 yrs remission, the fear of relapse is always in the back of our minds. It’s one of several reminders of the obstacles and challenges experienced with rare cancers.
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