When the first person who meets you at the Sydney Children’s Hospital in Randwick is a social worker, not a doctor, you know it’s bad. But we knew that already.
For six months Daisy, our five-year-old daughter, had been suffering from short sharp headaches and vomiting. Over that time, we saw nine doctors, including a paediatrician and a paediatric neurologist. All of them reassured us she had childhood migraine and would have to learn to live with it.
But the headaches got worse and more frequent
I trawled through Google Scholar for the latest research on childhood migraine. It didn’t take long to discover that Daisy’s three-minute headaches—where she clutched the back of her head and screamed in pain—fell way outside the diagnostic criteria for migraine.
None of the doctors we saw would recommend an MRI, but when Daisy suffered one of her headaches as soon as she awoke it raised a red flag that was impossible to ignore.
I bundled her in the car and took her to visit a friend of mine, Dr Craig Dyer, who happens to be one of Sydney’s most respected radiologists. He put her in an MRI machine and 15 minutes later called us into his room.
“I’m sorry,” he said, pointing to the scan and the peach-sized orb on her cerebellum. A wave of fear passed through my body. I felt like throwing up. Nothing seemed real. “Go straight to your GP. I’ve already called her.”
We strapped Daisy in her booster seat and drove quickly to our family practitioner, one of the doctors who’d previously insisted we had nothing to worry about. Neither of us spoke much on that journey.
The GP looked ashen. “Well, this isn’t what we were expecting,” she said, resting her elbows on the desk and cradling her face in her hands.
“You need to get to the Sydney Children’s Hospital right away, there’s a team waiting for you,” the GP said.
“Should we go home first and pack a bag?”
“No,” she said firmly.
We drove to the hospital, had our encounter with the well-meaning social worker, and then met with Daisy’s assigned paediatric neurosurgeon, Dr Saeed Kohn. Dr Kohn is an incredible surgeon who trained extensively in Australia and abroad. His bedside manner is exemplary, but he’s someone you hope you’ll never have to meet.
Dr Kohn warned us of the dangers of the surgery but added that we were left with little choice. The tumour was so large that there was a risk of “coning,” where the pressure builds to such an extent that the brain is forced through a small opening at the base of the skull, resulting in death. That same cerebrospinal pressure was causing Daisy’s headaches.
The surgery was scheduled for the next morning. Fortunately, Daisy didn’t really comprehend what was going on. She thought the whole ordeal was an adventure with free jelly and ice cream.
That evening, I walked around Randwick and like Daisy, wasn’t really able to get a handle on the situation. This stuff only happens to other people. We’re not supposed to be the other people; this is a mistake.
I was strolling back along Avoca Street towards the hospital when I noticed a large Gothic Revival church—Our Lady of the Sacred Heart.
I’d been brought up in a Church of England family but never baptised. My great, great, great grandfather was a Methodist minister who arrived from England in the 1850s and settled in Hay in the Riverina. My grandmother and parents were of the era where Catholics were viewed with suspicion and referred to as “Tykes.” My grandfather, the only Catholic in the family, was refused membership of the Gosford Freemasons.
But this particular January night, I didn’t care about any of that; I didn’t care about what brand of church it was. I just needed to pray to God for my little girl.
So, the church being closed, I dropped to my knees on the footpath outside and prayed like I’ve never prayed before. I didn’t try to bargain. I didn’t make ridiculous promises I wouldn’t be able to keep. I just asked in Jesus’ name for Daisy to make it through the operation and survive.
The next day, my wife and I were driving back to the hospital along Cleveland Street and the phone rang. It was Dr Kohn.
“The operation was a success. And the tumour doesn’t look like a nasty one.”
The relief was instant. Our shoulders heaved from sobbing.
Daisy wasn’t out of the dark woods yet. The sheer size of the tumour (a pilocytic astrocytoma), its position in the cerebellum, and the operation itself, meant Daisy had several days in the Intensive Care Unit.
Plus, she was suffering from Posterior Fossa Syndrome; a collection of symptoms that include mutism, irritability, and unsteadiness (ataxia).
“It’s the worst case I’ve ever seen,” said her neurologist, Dr John Lawson. Daisy could no longer walk or talk. She couldn’t even move.
After surviving ICU, Daisy spent six long months in 2CSouth: the neurological ward. My wife and I took turns staying in the ward with Daisy, sleeping on a mattress on the floor beside her that I “borrowed” from a bed in the corridor and to which the nurses turned a blind eye.
Each morning Daisy would endure a raft of therapies, and then I would leave her to rest while I went up to Our Lady of the Sacred Heart to pray for her. I even came to know the wonderful Fr Peter Hearn and we had many enlightening conversations.
Finally, our next prayer was answered. Daisy received the gift of her voice. By this time, she was well enough for me to wheel up to the church where she would pray beside me. Later, when we eventually got back home, we began visiting our local Church, St Brendan’s, where Fr John Milligan agreed to baptise me.
Daisy’s next miracle was being able to walk again. Then to run. A year later she was baptised by St Brendan’s new priest, Fr Matthew Meagher, and confirmed by Archbishop Anthony Fisher OP himself.
When I asked her what he was like she answered: “His eyes were very pretty, a soft blue like the sky.”
Daisy is now 11 years old. Her annual scans are clear, her ataxia is barely-noticeable. She is the most resilient human being I’ve ever met. She and I attend Mass several times a week.
Last year the two of us organised for artist Michael Galovic to create an icon for our church. It shows St Brendan, struggling in a stormy ocean. As the waves rise around him, he stretches out his hand to Jesus to be saved.
It’s something Daisy and I know plenty about.