Meet Jack
As an only child, Jack is the centre of his parents’ world. Now six-years-old, he loves playing basketball with his friends and creating intricate worlds for his toy trains and firetrucks.
Jack was 14-months-old when his parents, Misty and Rohan, noticed something wasn’t quite right. Jack was losing the few words he knew. All he could do was mumble in frustration. To make matters worse, Jack began to experience seizures, sometimes up to three times a day.
“He’d just go blank, he’d switch off. You could snap your fingers and get no response. 10 to 20 seconds later, he’d go back playing like nothing happened,” recalled Rohan. Misty said, “it was confronting and devastating to watch… it was almost like he knew it was coming.”
With no history of seizures in their family, they rushed him to their local practice.
“You try your best to get through every seizure. But what choice do you have as a parent? You’ve got to be there. You’ve got to catch him where you can and help him regain his faculties,” said Misty.
In early 2020 the family was urgently referred to The Royal Children’s Hospital, Melbourne (RCH).
After numerous tests, scans and admissions, it was confirmed that Jack had epilepsy.
“Jack’s electroencephalogram (EEG) showed some slow activity and abnormal electrical activity over the left side of the brain… which is important in language development, memory and learning,” RCH Neurologist Dr Jeremy Freeman explained.
A month on, things took a turn for the worse. Misty and Rohan got the news no parent wants to hear – Jack had a brain tumour.
With more targeted testing required, all the family could do was wait.
“It was heartbreaking because we had more questions than answers… I felt helpless as a mother and didn’t know if Jack was going to survive,” said Misty.
Although it wasn’t growing, the seizures it caused would continue, eventually eroding the language areas of the brain at an important time in his development.
And despite a lengthy regime of anti-seizure medication, Jack’s seizures only worsened.
“You can try and comfort him during that time but there was nothing else that we could actually do apart from keep him safe,” said Rohan.
After serious discussions with the care team, the decision was made to remove the tumour.
“The surgery had two goals,” said Neurosurgeon Dr Wirginia Maixner, “one is to get seizure control, and the other is to do a tumor resection.
“For someone Jack’s age, reassurance from parents is very important. And lots of cuddles.”
For Misty and Rohan, it was a day of tense anticipation.
“I just looked at Jack and thought, is this the last time I’ll hear him grunt something that sounds like mum?” said Misty.
The hours crawled past, “it’s not the sort of surgery you want to rush. So, we take our time to be slow and steady during the operation,” said Dr Maixner.
After a long day – the family got the call, Jack’s surgery was a success.
All that was left was to wait for their little boy to wake up. They weren’t expecting what happened next.
“Within 24 hours of surgery occurring, Jack’s sitting up in his crib…and he’s actually able to do a jigsaw puzzle… that was our first sort of indication everything had gone okay,” said Rohan.
After a challenging but quick recovery period in hospital, Misty and Rohan took Jack home, swollen but healing.
“He’s doing really well. The seizures stopped, his development is improving, his tumor isn’t there. I think we’re in really in a really good position,” Dr Maixner confirmed.
In the weeks that followed, Jack appeared seizure-free and for the first time in a long time, they heard him speak.
“His first word as a baby was “dad”, his first word after surgery was “mum”, so we both got a win,” Rohan said.
As he learns and grows, the team will continue to monitor his development.
“Even though he might not be fully at where some of his peers are, he’s working very hard to get there. His future looks bright,” said Rohan.
“Jack’s journey makes us appreciate the little things in life, the small wins and the people around you,” said Misty.
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