Two-year-old Ethan died last month after every bone in his body was riddled with an aggressive childhood cancer and given less than a 50 per cent chance to live.
The toddler was initially diagnosed with urinary tract infection after parents Ryan and Kate Paterson, from Sydney, noticed Ethan was in pain and stopped walking.
After failing to get better, scans showed a mass on Ethan’s adrenal gland and led to his Neuroblastoma diagnosis — a cancer his family had not heard of.
There was no improvement after the child endured three months of intensive chemotherapy, so he was placed on an immunotherapy clinical trial before receiving a double bone marrow transplant.
At that point, the treatment appeared to have worked so the family celebrated Christmas at home with family they had not seen in months because of border restrictions.
But, to the family’s dismay, Ethan’s cancer quickly returned and was later given just days to live. He died on February 18 this year.
Mr Paterson, 40, told NCA NewsWire the family were at first optimistic that Ethan could beat the cancer.
“Unfortunately with Neuroblastoma, if the cancer comes back, it’s a death sentence and there is a zero chance of survival,” the father of two said.
“As hard as it is to think about (Ethan’s death), Kate and I take great comfort that we think Ethan had enough (after everything he’d been through). We’re pretty proud of him.
“The highs were so goddamn high and the lows were rock bottom and there were never little wins for us. It was such an emotional rollercoaster.”
Mr Paterson said Ethan’s older brother Aiden, agedxjmtzyw five, was “resilient” but noticed the loss of his “best mate” during the quiet times.
“To tell a five and a half year old kid that his brother has gone to heaven is pretty heavy stuff.
“He’ll be playing race cars or Pokemon in the lounge room and he goes to turn around and say; ‘hey, Ethan’ and you see him do it.
“They were so ridiculously close and the cancer only brought them closer. That sense of loss and not having Ethan there has affected him a lot.”
He said he and his wife, 39, understood when others said they felt a hole in their lives when someone passed away.
“I can still feel Ethan in my arms, like he’s there but he’s not. We are just devastated … we’re doing it tough.”
Ethan was remembered by his father as a cheeky and funny little boy who had to be forced to give a kiss and a cuddle and the complete opposite to his brother.
“He idolised his brother. He was his shadow and would not leave his side.
“He was a really fun little kid with a sense of humour.
“Kate and I say it all the time, the world is going to miss out on a pretty funny little dude. He was just hilarious.”
The Beverly Hills resident said the limited information on possible treatment plans or knowing the percentage of it working due to the lack of research or data was “frustrating”.
In a bid to make better treatment options more accessible for future patients, the Paterson’s are trying to help Neuroblastoma Australia raise $200,000 at its upcoming Run2Cure event on April 3 — the first held since the Covid-19 pandemic began.
The family are also hosting a celebration of life on Monday as Mr Paterson said he and his wife didn’t want a funeral or to see their son “in a box”.
Run2Cure aims to raise money for research into this aggressive childhood cancer with participants able to run distances from 1km to 21.1km.
Children diagnosed with neuroblastoma are on average aged just two years old.
Neuroblastoma Australia chief Lucy Jones said a third of patients that survive have long term effects from their treatments because they were so toxic and extensive.
She said $200,000 hopefully raised at the event would help support the charity’s next round of research grants where the most innovative and leading research projects are selected by its Scientific Advisory Board.
Head online to participate or donate.
