At barely one week old, Nixon underwent a five-hour operation to biopsy the tumour. An agonising week went by before his parents, mum Brodie and dad Nick, received the devastating news that their baby boy had cancer, an extremely rare and aggressive tumour called an extrarenal rhabdoid tumour. Nixon needed chemotherapy straight away.
“You just don’t think about babies being born with cancer” said Brodie his mum.
“I just cried and cried, and then I thought, I can’t keep crying. I’ve just got to pull myself together and deal with it”.
At just 2 weeks old, Nixon’s tiny body was hooked up to machines and injected with potent drugs. As Brodie and Nick watched helplessly from his bedside at The Children’s Hospital Westmead, each day, his tumour started to shrink. It gave them the first real sign that Nixon might pull through.
After four gruelling rounds of chemotherapy, Nixon’s tumour was small enough to remove with surgery. Then followed six more rounds to target any remaining cancer cells.
During his short life, Nixon has endured over 30 weeks of harsh chemotherapy and six surgeries. He still feels the effects of his treatment, undergoing complicated skin graft procedures to help heal his head wound where the tumour was.
Now, it’s a waiting game. Nixon is doing well, but he’s not out of the woods yet. If Nixon relapses, his chances of survival significantly decrease. Survival rates for children who relapse are less than 30%. But here at Children’s Cancer Institute, we’re on a mission to change that.
Aiming for zero
A unique program, and the largest initiative ever undertaken for childhood cancer in Australia, the Zero Childhood Cancer national child cancer personalised medicine program will tackle the most serious cases of infant, childhood and adolescent cancer, aiming to take survival rates to 100%.
The program is led by scientists from Children’s Cancer Institute and clinicians from the Kids Cancer Centre at Sydney Children’ Hospital, Randwick. It’s at the international forefront – a highly innovative approach to childhood cancer research that heralds a new era in childhood cancer research and treatment.
Our researchers will be analysing children’s individual cancer cells to give hope to children with the highest risk of treatment failure or relapse, children just like Nixon.
In a major move forward in establishing the program, we’re engaged in a pilot study involving 33 children to date. With extra support, we can move to a national clinical trial next year. By 2020, our hope is to roll out a nationwide program for all children with high risk cancers.
In Australia alone, more than 950 children and adolescents will be diagnosed with cancer this year. Many won’t survive. In fact every week in Australia, nearly 3 children will die of cancer.
A chemotherapy-free Christmas
This Christmas will be a very special one for Nixon’s family. It will be Nixon’s first at home without chemotherapy – an important milestone in Nixon’s story.
Nixon’s a feisty toddler who loves to chase his older siblings around, leaving chaos in his wake. The truly extraordinary thing about him is just how ordinary he is. Just like millions of other children around Australia, Nixon will be waiting for Santa at home this Christmas Eve.
Brodie and Nick feel lucky for every moment they have with Nixon. They are enjoying every day with him, knowing that if he relapses he will again be in the fight of his life. This is why research is so important.
Please join us in wishing Nixon and his family the very happiest Christmas. And all of us at Children’s Cancer Institute wish you and your family Season’s Greetings and a wonderful 2017!