Children and their families shouldn’t have to go through this. We want to stop this happening to anyone else. Isaac would want that.Geraldine, Isaac's mum
Isaac was a gentle giant. A loving, generous and nurturing boy who seem to always put the needs of others ahead of his own. But at just 12 years, Isaac was diagnosed with a rare and terminal brain tumour.
The best way to describe Isaac was a “Gentle Giant”. So much taller than all his peers and always assuming the role as protector in looking out for others. Isaac was a loving, generous and nurturing boy who seem to always put the needs of others ahead of his own. It was a surprise to all his family that such a rambunctious and cheeky infant would evolve into such a mature, independent and thoughtful boy, often seen as years older than his mere 12-year old self.
His mother, Geraldine, recalls Isaac as a toddler meeting a little girl in a playpark and giving her a big hug, she thought he was going to flatten her! “He never meant to harm anyone, he just did it because he was so full of love and excitement; so full of gusto, full of life” she says.
Isaac, his brother Angus, parents Gary and Geraldine were close knit, spent much of their time hanging out at the beach on weekends, going on family holidays and living life to the full. And at the heart of the family was Isaac. A confident and friendly child who could easily talk to adults and children alike and was much loved by all who knew him. He was curious and thoughtful – people often described him as ‘an old soul’.
Isaac started high school and was interested and curious, keen to be involved and experience everything. He loved rugby, where he was developing great skill in using his big frame to tackle the opposition, representing his school and local club. Music was also a passion – he played the Tenor saxophone in two school bands as well as singing in the choir.
It was this busy schedule of after school activities and homework that made Geraldine and Gary think stress or anxiety might be to blame when Isaac began to complain of headaches and started vomiting in November 2017.
“He was in Year 7 and had a lot of tests and assignments, so I thought it might be anxiety,” explains Geraldine. “Before we even saw a GP, we called a psychologist”. But when Isaac became dehydrated and started to lose weight, Geraldine and Gary took him to hospital, where they were told that he needed to be admitted. “The next morning, they did an MRI and told us he had a tumour. We were like, “What? He has anxiety, he’s just got stress. I honestly couldn’t believe the diagnosis.”
Isaac was immediately rushed to Sydney Children’s Hospital, Randwick. The family had an agonising wait while more tests were done. Then came the heartbreaking diagnosis: a brain tumour called anaplastic astrocytoma Grade III. The cancer was rare, inoperable and terminal.
Gary and Geraldine were confronted with the reality of the heartbreaking diagnosis. “The doctors told us it was terminal, but we wanted a miracle and with each treatment we thought he could be part of that 5% that made it through,” said Gary.
Still suffering from headaches and nausea, Isaac underwent an operation to drain some of the fluid from his brain and release the pressure. Soon after, the grueling schedule of radiation and chemotherapy began. Radiation treatment was given every day for six weeks and meant Isaac was strapped to a bed for almost 30 minutes with a cage around his head. He suffered ongoing nausea, a series of seizures and a range of other horrific side effects but Isaac never complained.
“While he was having treatment, he was vomiting a lot and he must have felt disgusting and so unwell. But he faced it with such gusto and didn’t flinch once. He was so strong, especially for a 12-year-old.”
The pressure from the fluid in his brain had to be relieved regularly and a shunt was installed in his head. Sometimes the pain was too much, even for such a strong boy.
“He was starting to lose colour. The pain was so bad we had to give him morphine.”
The shunt released some of the pain and Isaac was determined to get back to his active life. He attended school for few hours, played some basketball and went to the movies with his friends.
Radiotherapy ceased after six weeks and then began oral chemotherapy which continued for six months. Isaac faced each challenge with incredible bravery, while his parents maintained hope.
“We changed his diet, we started acupuncture, he had massages, we tried meditation, he went to physio… we did anything possible that we could have done to help Isaac,” says Geraldine.
As the tumour continued to grow, this strong, confident young boy was stripped of his most basic functions. First his eyesight: Isaac could hardly see at all and when he could, he had double vision. He was then confined to a wheelchair as the entire right side of his body gave way. Soon he couldn’t walk on his own, was incontinent and in constant pain. Isaac was admitted to palliative care on 17 November 2018.
On 26 November 2018 – less than 12 months after his diagnosis, Isaac passed away.
“Sometimes life isn’t fair and none of it makes sense,” says Geraldine.
Watching Isaac going in and out of hospital, in constant pain and undergoing treatment was torture for the family. But Geraldine and Gary say that the hardest part is now. “The pain and the suffering we feel now is indescribable. For us this is the hardest part, living without your son.”
They are determined that no other family should have to endure this unbearable loss. And so, they are determined to raise funds for brain cancer research to find a cure and save future children from this devastating disease. They have raised a staggering $500,000 towards their goal of $1million.
Today, brain cancer accounts for the largest number of cancer deaths in children in Australia and there has been little or no improvement in survival over recent decades.
“Imagine if through this research, this money, the scientists find a cure and they save even just one kid, imagine how incredible that that would be?” Says Geraldine.
“Children and their families shouldn’t have to go through this. We want to stop this happening to anyone else. Isaac would want that.”