This “Pocket Rocket”, as mum Ursula calls him, is going strong in spite of the uncertain future he faces.
Nicholas was diagnosed with high-risk stage IV neuroblastoma, a form of cancer made up of cells found in nerve tissues of the body, when he was just two years old.
His doctors said he only had a 50 per cent chance of surviving, nevertheless they, along with his family, were prepared to give the disease everything in their arsenal to save his precious life.
Nicholas was diagnosed with neuroblastoma when he was 2 years old.
His mum Ursula shares how childhood cancer affects the whole family and why science is key to survival of all children diagnosed.
Ursula kept meticulous records of each procedure in a regimen that included eight rounds of chemo, major surgery resulting in a 10-night stay in ICU, a bone marrow transplant and a dozen cycles of radiotherapy under anaesthesia.
“At one point, he needed a high-dose injection of radioactive material,” Ursula recalled.
“Nicholas’ body was so contaminated he was isolated for five days in a lead-lined room. The nurses were his only visitors - and they had to wear radiation monitors even if they were only in his room briefly!”
The side-effects of each treatment were horrific. As time wore on, the cancer wasn’t responding as the medical team hoped. The toddler’s chances of survival kept decreasing.
That was then. Nicholas with his sister Charlotte (L) and brother Luke (R) who shaved their heads in solidarity.
Hope came in the form of a six-month clinical trial to test a new remedy; immunotherapy. It proved to have the most positive impact, but as Ursula explained, it didn’t obliterate the disease.
“After 18-months of what can only be described as gruelling medical care, Nicholas was left with a dozen spots of cancer throughout his body,” said Ursula.
“Even today, the doctors don’t know if these spots are dormant active cancer cells or if they have matured to a benign state,” she said.
“We’ll continue with regular tests and scans to keep an eye on any changes,” said Ursula. “But considering he is stable, reasonably well and enjoying life, we’re not going to subject him to more treatment.”
This is now.
That’s because impacts of the high-dose multi-layered therapy to save his life, have left Nicholas with partial hearing loss, an adrenal insufficiency that will require daily medication for the rest of his life and if he were to break a bone, he’d need an injection otherwise his body will go into shock and he could die. That’s just for starters.
“He will be infertile and can never play contact sports,” said Ursula. “He also has an increased risk of kidney, liver and heart failure by the time he is in his 20s as well as the chance developing a secondary cancer.”
All those treatment by-products are what Associate Professor Alexander Swarbrick at Garvan Institute of Medical Research is trying to overcome with his research to discover new drugs to treat neuroblastoma.
“Survival rates for this disease are intolerable,” said Associate Professor Swarbrick. “We are committed to changing these statistics.”
“My research aims to find a new treatment for kids like Nicholas along with those who haven’t been so fortunate,” he said.
“We hope the drug we are currently working on will more effectively eliminate neuroblastoma while minimising the harmful impact of chemotherapy,” he said.
Associate Professor Swarbrick said if he and his team are successful, a new, less toxic therapy will be ready for clinical trials in children within four years.
In the meantime, Nicholas continues to inspire and amaze Ursula who credits her son for teaching her more than she’s taught him.
“I used to worry he’d think I was a cruel person for allowing him to have so many painful procedures,” said Ursula. “All I could do was hold his hand and be there for him, it broke my heart.”
“Then one day I was stitching up one of his little stuffed animals when he came up and held the toy’s hand, comforting it, until I had finished,” she said.
“That was the moment I knew, having me just being there holding his hand was enough for him.”