Children's Cancer Institute

Listen to your gut. I want every parent to just trust

- Alex, Noah's Mum

Noah’s parents had only just begun getting to know their little boy when he was found to have a giant tumour growing in his abdomen. Then all of a sudden, life became dominated by hospitals, cancer treatments and medical procedures.

Pre-diagnosis

It had been a rough year for baby Noah, mum Alex, and dad Jack. When Noah was only four months old, floods wiped out the family home in Tasmania and they were forced to relocate to Jack’s mother's house.

With both parents working, Noah spent much of his time with his nan.

‘We didn’t really have a chance to do much as a family before Noah was diagnosed,’ says Alex. ‘We’d just started doing some little things, some travel around Tassie, and we were getting him to crawl.’

Symptoms

Noah was lethargic, wouldn’t drink his milk and developed what looked like conjunctivitis. Alex took him to the doctor but was told he was fine and to take him home and give him some water.

When Noah became even more lethargic then began to vomit, Alex decided to take him to hospital, only to be sent home a few hours later. Less than 12 hours later they were back. This time, a paediatrician examined him, finding that his stomach was distended and felt rock-hard.

I immediately thought of cancer

- Alex, Noah's Mum

‘I was like, what does distended mean?’ says Alex. ‘I was told his organs are not where they should be and everything doesn’t feel right. I immediately thought of cancer. There’s a lot of cancer on both sides of the family.’

An ultrasound was done, showing what appeared to be a big mass in Noah’s stomach. At this point Noah had a cannula inserted into a vein in his head — a procedure Alex says was traumatic.

‘In the morning, we were told we were getting sent to Melbourne. But they still didn’t mention the word cancer to us; they just said lump and mass,’ she shares.

Diagnosis

At Melbourne Children’s Hospital, Noah began to go downhill very quickly. He was admitted to Intensive Care for 10 days, during which he was sedated and hooked up to a breathing machine.

‘They were just trying to keep him alive at that point,’ says Alex. ‘It was so unbelievably traumatic to see him lying there connected to all these wires and tubes and on all these medications.’

'At the same time, they’d done a biopsy, all the scans and tests. They were waiting for the results, but they’d already started treating him for cancer because our oncologist knew instantly that’s what it was.’

It was so unbelievably traumatic.

- Alex, Noah's Mum

'It all happened so quickly. I still can’t remember it properly,’ says Alex. ‘We got to Melbourne on 4 December and by the 12th, we had our diagnosis: malignant rhabdoid tumour.’

‘They put you in this little room and tell you your kid has cancer,’ she shares. ‘For me, it was like, alright, we’re in survival mode. We can’t cry about this; we've got to keep our kid alive.’

‘I still don’t think I’ve fully absorbed everything that's happened.’

Treatment

From the outset, Alex and Jack were told that — best case scenario — Noah had a 30% chance of survival. Six rounds of chemotherapy were administered with the intention of shrinking his tumour to a point where it could be operated on.

‘Because the chemo made him so sick, we had to postpone treatment a lot,’ explains Alex. ‘In six months, we probably left hospital for two weeks all up.’

Eventually, surgery was scheduled, just before Noah’s first birthday. The tumour's location in the liver made for a tricky 8-hour operation, but Noah pulled through, spending the next five days recovering in Intensive Care.

His recovery was so quick,’ says Alex. ‘The day after his surgery they started waking him up, and oh my God, he was so lively! He was waving at me, and I remember holding him; he was beautiful.’

By the time we got our scans, it was too late to do anything

- Alex, Noah's Mum

Noah was now nearing the end of chemotherapy, and Alex and Jack were looking forward to the end of treatment when they hoped Noah would be declared cancer free. But about six days before treatment ended, they felt he had begun to go downhill.

‘I begged every single doctor I could find to get scans done on Noah because he was starting to fall unwell,’ Alex shares. ‘But we kept getting told he was fine, and that he wouldn’t need any until end of treatment.’

‘By the time we got our scans, it was too late to do anything. He was already too filled with cancer.’

Going home

Alex and Jack were told that Noah’s cancer had spread, that nothing further could be done, and he had six weeks to six months to live.

After almost a year of living in Melbourne, they were desperate to get Noah home to Tasmania. Fortunately, their real estate agent was able to find them a house quickly, which their family furnished for them.

‘Thank God, because we were wanting to come home no matter what,’ says Alex.

‘Between the time we got home and the time he passed, we only left the house with him once. We have a place in Tassie called House of Spuds, and there's this photo of Noah and Jack eating pizza and sausage rolls together there. It was beautiful to watch.’

The final chapter

At home, Noah was on intravenous pain medications and hooked up to an oxygen machine.

‘He was on so many meds, and he couldn’t eat or drink anything,’ says Alex. ‘It was a waiting game.’

In his last days, Alex and Jack did all they could to make Noah comfortable.

‘We told him everything we wanted to tell him. We told him that he didn't need to be in pain and that he could let go,’ she shares. ‘We didn’t want him to be in pain anymore.’

Just 10 months after he was diagnosed, Noah passed away in his sleep.

I want there to be hope

- Alex, Noah's Mum

Reflections

Asked about her experience with childhood cancer, Alex says she wants to encourage all parents to pay attention to their instincts and not be afraid to push for answers.

‘Listen to your gut. If you think something is wrong, you go to the doctor, you go to the hospital, and you don’t stop going until someone takes you seriously,’ she says. ‘I want every parent to just trust.’

She is also keen for people to learn more about childhood cancers, particularly rhabdoid tumour, the type of cancer Noah had.

‘I want to raise awareness of this tumour, and hopefully get more research done, because the survival rate is so incredibly low. They made it out to be that there’s not really any hope. And I want there to be hope.’