“We hadn’t heard of Rhabdomyosarcoma before Priya was diagnosed, we had no idea what this cancer “journey” would be like. It definitely puts your priorities in life in to perspective,” said Vanessa, Priay's mum.
Cheeky and vivacious Priya calls the sleepy seaside town of Yeppoon in Central Queensland home with her Mum Vanessa, Dad Ravi and her best buddy, dog Bailey.
Last March, when Priya then aged six was getting ready for school Vanessa noticed that her right hand was swollen. A closer look at the swelling Vanessa could feel a lump and asked Priya if her hand was bothering her, to which Priya replied “Nope, don’t worry about it Mum!” Vanessa said it was typical of her daughter to down play any ailments “Priya just wanted to get to school and see her friends.”
But Vanessa intuitively felt that something wasn’t right and went to see their family GP. Having examined Priya’s hand their GP booked an ultrasound and x-ray for that same day.
By the end of the week Priya’s parents were told that she would need to be referred to paediatric hand surgeon, that further imaging, blood tests and a surgical biopsy would need to be carried out to determine what the lump was.
Vanessa and Ravi made the decision that they would fly to Sydney for Priya to have the surgical biopsy and follow up tests as they would all have more support from extended family.
After Priya’s surgery her surgeon told Vanessa that Priya’s lump was a malignant tumour. Vanessa continued, “after the consultation I was in shock but kept it together for Priya and my father in law who had driven us to the appointment. You try to keep calm and not jump to the worst possible scenario, but when I spoke to Ravi later that day I just broke down with fear for our little girl.”
Priya was then referred to The Children’s Hospital at Westmead to Paediatric Oncologist Dr Geoffrey McCowage. Dr McCowage advised Vanessa and Ravi that although they were still unsure what type of cancer Priya had, she would need to begin treatment immediately as her cancer had metastasised to her lungs.
Dr McCowage advised Vanessa and Ravi that they were going to treat Priya’s cancer aggressively, which would mean Priya would under go chemotherapy, radiotherapy, further surgery and would take a year to complete.
What started off as unusual lump in Priya’s hand became a domino of successive bad news that culminated in Priya being diagnosed with a rare type of childhood cancer, Stage IV High Risk Alveolar Rhabdomyosarcoma
Ravi recalled “it was just one thing after another, bad news, bad news, bad news. Priya has a tumour, Priya has a cancerous tumour, Priya’s cancer has spread, then you find out that the type of cancer Priya has, roughly only three kids in Australia get. Three! Then if that wasn’t enough of a kick in the guts, she has the subtype that has the less favourable survival rates of the two.”
Through all of this Priya has shown incredible resilience and kept her cheeky sense of humour!
Vanessa says, “Priya is amazing, she never complains, she never refuses to go to hospital or have any of the numerous procedures she has to have. And to be honest I would totally understand if Priya said that she was fed up but instead she cracks jokes to make us laugh and smile."
The Ramswarup’s had some good news on the 17 December 2015, Priya underwent a total body PET Scan which revealed that there was no evidence of disease in her lungs, the metastases had gone. Priya’s hand revealed minimal evidence of disease so the treatments Priya has received thus far appear to be working.
Priya will be on treatment until May 2016 and then go into maintenance and hopefully the Rhabdomyosarcoma will never return.
Vanessa and Ravi are grateful for the care Priya has received, they’re also thankful for organisations such as The Kids’ Cancer Project for funding the Tumour Bank so that research can continue to be done on Rhabdomyosarcoma and all childhood cancers.
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