My dream is that the words ‘paediatric’ and ‘oncology’ never have to appear in the same sentence again. And people who support the research are making that dream closer to reality
- Katie, Josh’s Mum
In October 2017, life for Josh and his family was good. Josh had just started preschool, his older brother, Ollie, had just started primary school, and baby brother, Albie, was just eleven months old. But a huge curveball was just about to strike.
Pre-diagnosis
As a five-year-old, Josh was strong, self-assured, and grounded. Sporty and adventurous, he loved to play outside and was often found climbing, riding his bike, or making things out of timber.
‘Josh grabbed life with both hands and both feet,’ says his mum, Katie.
Josh’s dad, Scott, lived with permanent disability as a result of a spinal cord injury, though was still able to run his own business and travel to Sydney during the week for work, while Katie worked from home as a freelance copywriter.
‘I’d describe family life at this time as content, organised chaos!’ she says.
Symptoms
All three boys were ‘as fit as fiddles’ when Josh started to experience unexplained fevers.
‘For several days, Josh’s temperature skyrocketed each evening up to about 41 degrees,’ Katie explains. ‘We tried three different antibiotics, but they didn’t make a scrap of difference.’
The GP was perplexed, so ran a blood test to check for various things, including glandular fever. While the results did not reveal the cause of the infection, they did set off immediate alarm bells.
‘The minute the pathologist saw the blood cell counts, they called and told us to get to Emergency as quickly as we could. It was surreal.’
Diagnosis
At the local hospital, a doctor introduced himself to Katie as a paediatrician and explained that the blood test results had shown some extremely low numbers, and further investigation was needed.
When Katie asked the doctor directly what he thought the problem was, the answer came: leukaemia. Josh was immediately transferred to Westmead Children’s Hospital, where a lumbar puncture confirmed the diagnosis of acute lymphoblastic leukaemia (ALL), and Josh was admitted straight into the oncology ward.
‘There was no waiting around for results, it was really quick,’ Katie says. But despite being given a definitive diagnosis, she struggled to comprehend it. ‘I was thinking, Joshie isn’t a sick child; he just isn’t.’
It wasn’t until late that night, sitting by Josh’s bedside, that the news finally sunk in — a moment Katie describes as every parent’s nightmare.
You would do anything to make it better. But there was nothing I could do – I couldn’t change the fact that he had leukaemia
Katie, Josh's Mum
‘It felt like my heart was breaking. Actually slow-motion breaking, cracking apart. You would do anything to make it better, to fix the problem. But there was nothing I could do – I couldn’t change the fact that he had leukaemia.’
A close friend of the family had died from leukaemia the year before, so Katie and Scott were very careful about breaking the news to their sons.
‘We told Josh and Ollie that the illness was very serious and dangerous, so it was going to take some time and a lot of medicine to make Josh better… but that worrying about it wouldn’t help, and we needed to find a way to still be happy about the good things around us. And one of those good things was that Josh had the very best doctors who were all trying to help.’
Treatment
From the moment Josh was admitted, things moved very quickly. Katie describes the pace of treatment and the onslaught of chemotherapy as ‘staggering’. However, while she says the first few weeks were horrific, life had to go on.
‘There was no option to collapse in a heap on the floor. We had two other boys to take care of and a daily logistical jigsaw puzzle to work out.’
Fortunately, Josh coped relatively well, with most of his side effects able to be managed and only a few unexpected hospital admissions.
The treatment is brutal, there is no way around it,’ she says. ‘I wish the research could find a way to make that easier
Katie, Josh's Mum
‘Basically, we went to ground for two years,’ says Katie. ‘It was bloody miserable and nothing short of terrifying for a long time, but Josh really was lucky.’
Aside from many of expected reactions to treatment drugs, such as leg pain and vomiting, Josh’s legs collapsed frequently during some of the chemotherapy protocols and Katie had to carry him.
‘The treatment is brutal, there is no way around it,’ she says. ‘I wish the research could find a way to make that easier.’
Today
Now eleven years old and in Year 6 at school, Josh is doing well.
‘Josh takes every opportunity that life offers him — sport, school, music. He’s just making the most of everything,’ says Katie.
He returns to hospital once every three months for monitoring. Katie says he has so far not suffered serious long term side effects, though they are always on the lookout for signs of post-traumatic stress disorder.
‘One positive side effect of the whole experience is that Josh is terrifically empathetic towards other humans,’ she says.
‘As for me, I’m enjoying a healthier, better philosophy on life. I was always pretty upbeat, but now I really am, because I know it can be whipped away from you so quickly. I’m frequently reminded how important it is to appreciate the now, including our kids, even when they drive us completely and utterly insane!’
Reflections
Katie says the ripple effects of childhood cancer are far-reaching. ‘The impact on the family was massive, and the decompression now, four years after Josh finished treatment, is still ongoing.’
But while she says she could ‘talk about the awfulness for hours’, she is a firm believer in moving on. ‘Yesterday is heavy, so put it down. We are so, so lucky that our son survived and was one of the lucky ones, and we appreciate that daily.’
‘I very rarely get seriously stressed in everyday situations … cancer slams everything else into perspective. I’m more confident since I know I coped with something really very hard, and I care less about what people think. To paraphrase the poet Mary Oliver, we have one short, wild and precious life.’
Reflecting on childhood cancer research and those who choose to support it, Katie says it’s about making the world a better place. ‘When you’ve seen the suffering of small, innocent humans, the thought that you may be able to help alleviate some of that suffering is so powerful.’
‘My dream is that the words ‘paediatric’ and ‘oncology’ never have to appear in the same sentence again. And people who support the research are making that dream closer to reality.’
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