Beaming in his bassinet, chuckling in his car seat and happy in his high chair, my baby boy Marko was always smiling.
Our third child, Marko was a relaxed, grinning version of his big brothers Petar, then six, and Aleksa, three. So, when he suddenly stopped smiling, I was worried.
‘I think there’s something really wrong,’ I told my husband, Andrija, 41, in February 2018.
At 16 months old, Marko had developed constant diarrhoea and was losing weight. His smiles had become screams and the diagnosis of lactose intolerance didn’t sit right.
One of our doctors suspected more, too, and after tests, Marko was given an ultrasound. That’s when we were told the devastating news – Marko had an orange-sized cancerous tumour, or neuroblastoma, in his abdomen
‘It has a very good prognosis,’ Marko’s oncologist reassured us. ‘We’ll remove the tumour and he should be fine.’
Incredibly, that’s what happened.
The tumour was also causing the diarrhoea, so once it was removed Marko’s tummy troubles were over. After six weeks of worry, Marko was smiling again.
But then, that October, when Marko was nearly two, he started limping.
‘There’s another tumour in his abdomen,’ the oncologist told us after an MRI. It measured 10cm, and there were also tumours in his pelvis, leg bones and bone marrow. It was an absolute shock to everyone.
Marko was the only child in the world whose low-risk neuroblastoma had mutated into a second, aggressive one. Doctors had no reason or explanation. And now we were facing a more dismal outcome.
‘One in four children die within five years of treatment for this kind of cancer,’ I read to Andrija, horrified, as I did research on the computer.
It was confronting and heartbreaking but we had to keep going for Marko. For the next year, our brave boy went through five cycles of chemo, a stem cell transplant and 20 gruelling rounds of radiation, followed by immunotherapy.
‘We’ll get you smiling again darling,’ I’d say. Some days, he was too unwell to open his eyes, other days he’d play with his dinosaurs and sing songs.
‘He’s responding well,’ we were told. ‘The tumour’s disappeared.’
It was comforting, but I knew the risks of relapse too well and Marko had already been so unlucky. ‘Surely there’s something else we can do to prevent it happening?’ I said to Andrija.
Googling like crazy, I found a hospital in New York doing a clinical trial, giving children who’d been treated for neuroblastomas like Marko’s a vaccine to prevent them developing again.
Excitedly, I showed Andrija and our oncologists who all agreed it would be perfect.
‘It’s not available in Australia,’ we were told. ‘It’s going to be very expensive.’
Talking to other Aussie families travelling for the treatment, we discovered it cost around $350,000 – more money than we could ever imagine.
‘We’ll sell the house,’ Andrija said. But we had two other kids to think of. We couldn’t do that to them. Crowdfunding online became our only option.
Friends and family were incredible. We raised $120,000 and, while we were so grateful, I still spent every night awake, worrying where the rest could come from.
Then came a strange kind of miracle.
Former Wallabies player Israel Folau started his own crowdfunding page. He’d been sacked by Rugby Australia after making a series of homophobic comments.
Despite his own personal wealth, he was asking the public to donate $3 million to fight for his job back. It caused an outcry, with the media saying that sites like GoFundMe were for sick kids and not wealthy sportsmen.
One journalist spotted Marko’s account and asked me to comment. ‘Okay,’ I agreed nervously. I didn’t want to cause trouble, but it did seem unfair that Folau had raised nearly $1 million in days, while we – and all the other desperate families out there – were nowhere near our goals to save our kids’ lives.
Marko and I did a few TV interviews and immediately, his account received a huge influx of donations. ‘We’re almost at our goal,’ I gasped checking our page.
Within 48 hours, we had $250,000. Together with the initial amount we’d raised, we could pay for the treatment and travel to the US with all three kids.
I was in tears.
Best of all, in February, Marko got the all clear from his latest neuroblastoma. Our trip to the US has been put on hold for now due to the coronavirus but we’re waiting for a new date from the hospital.
Hopefully it will prevent our boy getting sick again.
Our experience has made me feel responsible for other families fighting for funding so I’ve been writing to my MP, and anyone else I can. Families shouldn’t have to resort to crowdfunding when their child’s health hangs in the balance.
As for Marko, we don’t know what the future holds. But, for now he’s smiling again, and that’s all that matters.
To help, visit gofundme.com/f/markosmile
For more, see this week’s that’s life! – out now!