Children's Cancer Institute

No child or family should have to suffer the way we have.

- Alex, Henry's Mum

Nick-named ‘Muffin’ from the hit TV show Bluey, Henry was an adventurous little boy: curious, happy and cheeky. Then all of a sudden, everything changed.

Pre-diagnosis

At two years of age, Henry was enjoying life in a happy and loving family, with two big sisters, Ava and Thea, and a little brother, Teddy. Active even as a baby, he started crawling at a young age and was always on the go.

‘He couldn't sit still, he just needed to be moving,’ says mum, Alex. ‘He was walking at nine months, and running not long after that. He also climbed on everything.’

With the two older girls at school, Alex was enjoying maternity leave and the opportunity to spend quality time at home with the boys.

‘It was probably the best time of my life,’ she says. ‘I had all my kids and really no worries.’

Symptoms

In early 2022, Alex and husband, Mark, were starting to adjust to life with four kids when Henry got sick. At first, they thought he had gastro. When he couldn’t stop vomiting, Alex took him to hospital where he was rehydrated, given anti-nausea medication and sent home.

Around this time, Alex also noticed Henry was losing weight — something she put down to him being a picky eater and having just had gastro. Nonetheless, she had an uneasy feeling.

The back of my mind was always just, "Something's not right"

- Alex, Henry's Mum

‘For a few weeks, I had a thought at the back of my mind that something wasn’t right,’ she says. ‘But generally Henry was fine.’

A month after the gastro bug, Alex decided to take Henry and little brother Teddy to the beach with her mum. Henry was running around chasing birds when Alex heard a massive thud.

‘I saw him trip on his feet, then he fell heavily and hit his head. I went running over there and he was just lying there. He was conscious, but not reacting in a way that you would expect for a child that’s just hurt themself.’

An ambulance was called and they were taken to Gold Coast Hospital.

Things get worse

With Henry appearing to be asleep for quite a few hours, a decision was made to do a CT scan. However, by the time the staff came to collect him, he was sitting up and eating and talking, so the decision was reversed. Instead, a blood test was taken. The results came back normal.

‘Being completely naïve, I thought that meant there was nothing really terrible to worry about,’ says Alex. ‘We were told he had a concussion and to just monitor him.’

The next day, Alex had to work and left Henry at home with Mark. After learning Henry had vomited a couple of times and hadn’t been able to get off the couch, she decided she was going to take him back to the hospital.

‘When I got home, one look at him told me that something was really, really wrong,’ she says. ‘He was almost grey.’

One look at him told me that something was really, really wrong

- Alex, Henry's Mum

At the hospital, Alex was explaining to the triage nurse about Henry’s concussion when he started vomiting everywhere. They were immediately taken into a room where several doctors and nurses came rushing in.

‘I just felt so blindsided,’ says Alex. ‘In my head I was thinking he’s got a concussion; we need to do that CT scan to make sure he doesn't have a bleed or something.’

‘I remember the doctor from the day before saying to me, “I’m just so glad you came back.” His condition had obviously changed so much.’

Diagnosis

Henry was given a CT scan and Alex told to wait for the report to come in. The doctor was putting a cannula in Henry’s arm when the call from radiology came through.

‘The tone of her voice, the look on her face … she was shocked,’ says Alex. ‘There's no way you could mistake that there was something really wrong.’

Alex was told they had found a mass at the back of Henry’s brain. ‘I felt like I just completely floated away from myself … like I wasn't even there in the room,’ she says.

A doctor then came in and asked Alex if she’d been told that Henry had a tumour. ‘He said to me, “It’s a medulloblastoma; it’s cancer and it’s serious.”’

‘I was all alone with Henry in the Emergency Department when I heard those terrible words.’

Treatment

Henry and Alex were transferred to Brisbane, arriving at the hospital shortly before midnight. Surgery was done to release the fluid around Henry’s brain, and the following day, an MRI was done to get a clearer picture of the tumour.

Much to Alex and Mark’s relief, when they met with the surgeon, they were told there was a good chance that most of Henry’s tumour could be removed.

The surgery went well, with the follow-up MRI confirming there was no visible tumour left. However, in the following weeks their relief turned to worry, with Henry unable to eat, swallow, or speak. ‘He was awake, but he couldn't move his body in any way,’ says Alex. ‘Every day we would ask, “Is this normal? Is he going to get better?”

Every day we would ask, “Is this normal? Is he going to get better?”

- Alex, Henry's Mum

During this time, Alex and Mark — who lived on the Gold Coast — took it in turns to be with Henry in Brisbane. ‘We swapped over every single day at the hospital so that we could be home with the other kids without being away too long,’ explains Alex.

After three tortuous weeks, Alex found out that Henry had ‘posterior fossa syndrome’, a known complication of the type of surgery he’d had.

Thankfully, Henry slowly regained most of his abilities, although his delayed recovery meant he was unable to start chemotherapy for eight weeks. Finally, after round one of chemo, he was able to go home for the first time.

Radiation Therapy

With Henry having been diagnosed with medulloblastoma and being placed in a low-risk group, his parents were told he would need no radiation therapy. This came as a huge relief to Alex, as she was aware of the damage radiation could cause to a developing brain.

Then came an unwelcome twist. The results of a brain cancer study that Henry had been enrolled in earlier came through, showing that he did not have medulloblastoma after all. He had a brain tumour known as ATRT (atypical teratoid/rhabdoid tumour).

‘I Googled it as soon as I was off the phone,’ says Alex. ‘The first line I read is that it has poor outcomes and survival rates.’

The change of diagnosis meant Henry would now be receiving focal radiation, targeted to the area where the tumour had originally grown (the ‘tumour bed’). Every Monday through Friday for six weeks, he was sedated and given radiation.

The day we went home from hospital was the first time I noticed something was not right.

- Alex, Henry's Mum

Following on from radiation, Henry was to start three rounds of high dose chemotherapy, each round so aggressive he would need a stem cell rescue (using his own harvested stem cells) to recover his bone marrow. These rounds required a 3-week hospital stay each time, meaning Henry spent Christmas in hospital.

Finally, in March 2023, nine months after diagnosis, Henry completed his treatment protocol.

‘The day we went home from hospital was the very first time I noticed something was not right,’ says Alex. ‘Henry wasn't weight-bearing on his right foot. Then, within a week, he wasn’t using his right hand.’

An MRI again showed no evidence of disease. However, changes could be seen in the tumour bed, and the doctors began talking of possible radiation damage.

Radiation Damage

Alex learned from her own research that if Henry had radiation changes, it could be something called ‘radiation necrosis’.

When she contacted the radiation oncologist, she was told the chance of that was less than 1% and it was far more likely the MRI changes were signs of disease recurrence.

‘Every appointment with our oncologist, I would cry and tell him Henry was getting worse,’ says Alex. ‘I felt utter desperation. Every day I saw him decline and I had no real answers.’

Eventually in July 2023, when yet another MRI showed no evidence of disease, Alex asked the oncologist directly if the ‘radiation changes’ were actually necrosis. ‘He said, “Yes, we believe so.”

‘Never did anyone ever communicate to us that necrosis could be progressive and can actually cause death,’ Alex says.

I felt utter desperation. Every day I saw him decline and I had no real answers.

- Alex, Henry's Mum

The final chapter

Alex and Mark looked at all available options to help reverse the effects of radiation damage. While they say they were initially discouraged from using certain therapies that appeared to be standard overseas – including hyperbaric oxygen (HBO) therapy – they were eventually able to try these.

However, Henry’s health had significantly declined by this point. He was no longer able to crawl, sit unassisted, or eat safely.

Henry died on 3 November 2023, just three years of age. Though there was no evidence of cancer, his body was simply unable to continue due to the extensive damage from radiation.

Today

Alex says that since Henry passed away, the family takes ‘any and every opportunity to talk about him and keep his memory and legacy alive.’

‘Teddy talks about Henry a lot and that makes me really happy. And we include Henry in everything we do, whenever we can.’

Asked why she supports Children’s Cancer Institute, Alex says that children’s cancer is different to adult cancer and deserves dedicated cures and treatment options.

‘We need safe treatment options for kids, and I trust and believe in the Institute to deliver them. We just need to back them.’

‘No child or family should have to suffer the way Henry and our family has.’