Her distress, though, is all too apparent.
Let me give you a bit of background.
Last year I spent some time in hospital with my youngest son when he woke up one morning and couldn’t walk. We went into emergency, and after loads of tests he was admitted. He didn’t go home for 10 days.
He wasn’t in pain and the doctors ruled out the terrifying stuff, but he still couldn’t walk. We spent those 10 days at the Sydney Children’s Hospital in the neurological ward and it was there that I met Marilee Mai.
It was early one morning and we both were making ourselves a cup of tea in the ward’s kitchen. I noticed her straight away because she had no hair. You kind of get used to seeing kids with no hair when you spend a lot of time in a children’s hospital, but not the adults.
‘Surely she doesn’t have cancer as well as a sick child,’ I thought to myself before saying hi, as we shared the small space and took turns with the kettle.
Meeting new people when you’re all taking care of sick children is a delicate process. Everyone is careful not to pry, but at the same time, your defences are stripped bare and you are at your most vulnerable. There’s an instant intimacy that goes on in this place, a place that feels like another world from the one that is somehow continuing outside the hospital ward.
So back in the kitchen, we chatted about our kids. Marilee’s five-year-old daughter, Milan, was recovering from an operation to remove a tumour, and she also had a toddler and a baby at home. She was still breastfeeding.
Milan had first been admitted to hospital in July 2017, after she fell asleep suddenly in the middle of her three-year-old brother’s birthday party. The little girl had been complaining of a headache that morning, and Marilee’s instinct told her to call the doctor.
Tests revealed Milan was living with an aggressive form of brain cancer called Medulloblastoma. Though her prognosis was supposed to be good (the disease carries a 70-80 per cent cure rate) she later developed leptomeningeal disease – a rare and deadly complication in which the cancer spreads to the membranes surrounding the brain and spinal cord. There is no cure.
Spending any time in a children’s hospital, as many of you may know, is a very sobering and humbling experience and, for the thousandth time while talking to Marilee that day, I thought about how suddenly life can change.
The next day it did change for us. My son recovered movement in his legs and we went home soon after, but I thought a lot about Marilee and her daughter.
And then a couple of weeks ago I received an email from one of Marilee’s friends with an update.
I reached out through this friend and asked Marilee if she perhaps wanted to talk. I know there are a lot of people who go through similar things and people who may go through them in the future. Just hearing directly from someone going through an incredibly tough time, I think, can have real value in making people feel seen and understood, like they’re not alone.
This is Marilee’s story…
To help Milan and Marilee, visit their Go Fund Me page.