Everything in your life just shifts. I stopped working for two years.
- Amanda, Jonah's mum
Always a clown who wanted to make people laugh, Jonah was just about to turn two when he was diagnosed with leukaemia. More than ten years on, he still likes to be funny. But with the memories and consequences of treatment to deal with, he now knows life has a more serious side.
Pre-diagnosis
It was about a week and a half before Jonah’s second birthday when his mum, Amanda, noticed a large bruise and a lump on his ribcage when she was changing his nappy. Earlier that day, Amanda’s mother (who’d been looking after Jonah when Amanda was at work) had suggested she take Jonah for a blood test, as he’d been sleeping abnormally long hours. On seeing the bruising, Amanda rang her mother to ask if Jonah had hurt himself. When the answer was no, Amanda and her husband, Dimitri, made a spur of the moment decision to take Jonah to their local hospital. Never in their wildest dreams did they think they’d be told he had cancer.
I asked my mum ‘Did he fall down? Did he hit himself?’ She said no. So I thought OK, let’s just take him to hospital.
- Amanda, Jonah's Mum
Diagnosis
When Jonah arrived at the hospital, he was taken straight out of triage and the nurses began counting the bruises on his body. “I got a bit concerned, thinking ‘do they think I abuse my child?’”, recalls Amanda. After a blood test was done, then a second test to confirm the results, she was told Jonah had blood cancer and needed to be transferred to Sydney Children’s Hospital. “I bawled my eyes out,” says Amanda. “I remember thinking ‘my child’s going to die’. I was in full panic mode.”
Treatment
Jonah began treatment straight away and was enrolled on a clinical trial featuring a new technique developed at Children’s Cancer Institute called minimal residual disease testing. Within months, he developed an antibiotic-resistant infection called MRSA and was put in isolation. ‘He wasn’t allowed to go into the play rooms. He was locked up in a room. Even when we were home, he couldn’t go out anywhere,’ says Amanda, adding that the lack of social interaction has had a detrimental and lasting effect on Jonah’s self-esteem. At the end of three long years of treatment, Jonah was declared cancer-free, though he still visits hospital regularly for checkups and will do for many years to come.
Only one of the parents could stay at the hospital, so we used to take turns. Coming home to no child and no husband… it was depressing.
- Amanda, Jonah's Mum
Today
Jonah is now in high school and loving playing goalie for his soccer team and learning both guitar and piano. Amanda is glad to have the ‘cancer journey’ behind them, though she says she still worries about the future. ‘It’s more than 5 years since treatment, so he’s considered cured. I worry more about the physical and emotional side effects.’
Amanda is a strong advocate for research into improved treatment for childhood cancers. ‘We need to make treatment better for our kids, with less side effects,’ she says. ‘It’s a hard thing to go through, not just for the child, but for the parents and all the family. ‘If you saw it then you would understand.’
The worrying never stops. It may lessen, but your worrying for your child never stops.
- Amanda, Jonah's Mum
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