Children's Cancer Institute

‘I'll be okay, Mum’ — those were his words.

- Naomi, Henry's Mum

Henry had been ‘super well’ the whole six years of his life. But when his mother noticed him looking pale and had blood tests done, everything changed in a heartbeat.

Pre-diagnosis

From the moment Henry arrived, his mum Naomi knew he was destined to be special. Born on the 29^th February 2016, a leap year baby via emergency cesarean.

‘I was overdue and I thought, he's going to come on the leap day, I know it. And of course he did. From that day, I've known he was going to be a unique little soul.' said Naomi

With Henry and his three little sisters — Zadie, Emmy, and Ochre — all under seven, Naomi was kept very busy.

Henry was in his first year of school in prep and was really enjoying learning about dinosaurs. He had a love for being outdoors in nature, whether that was iat the beach collecting shells and finding crabs or rding his motorbike around the farm. With his striking blonde hair and the cheekiest smile, Henry was truly magnetic and loved by everyone around him.

‘Henry was a very mature little boy, very kind, caring, and helpful,’ says Naomi. ‘And he was super well. I'd never had my children ever be sick. That’s why Henry's diagnosis came as such a huge shock.’

Symptoms

The first sign that something might be wrong came one evening in October 2022, when Naomi lined the kids up for bathtime and noticed Henry looking unusually pale. She checked with him then, and several times over the next couple of weeks, how he was feeling, but he always said he felt fine.

‘I would ask Henry, are you okay? Are you sick? And he’d say, No, I’m fine. But in my head, I was thinking he's anaemic or something,’ she explains. ‘I just could tell something wasn’t right.’

I just could tell something was up.

- Naomi, Henry's Mum

Naomi took Henry to a clinic where a nurse unsuccessfully tried to take his blood. A couple of days later, a pathologist with a reputation for being good with kids managed to keep Henry calm and extract enough blood for testing.

‘It was the following morning that we got the phone call from the doctor, saying we need you to come in, we’ve got Henry's results back early.’

Henry's haemoglobin levels were critically low — so low that Naomi was advised to take him straight to The Royal Children's Hospital in Melbourne.

Diagnosis

‘As soon as we got to hospital, they did further blood tests and then they put us in a room,’ Naomi explains. ‘By this time, it's probably close to midnight. They said that it was leukaemia and he had cancer. We were just in shock.’

But there was hope. The doctors explained that of all the cancers for a child to have, Henry's B-Cell acute lymphoblastic leukaemia (B-ALL) was highly treatable, with the highest survival rate. Henry's response was a characteristic: ‘I'll be okay, mum.’

Treatment

Henry began intensive chemotherapy immediately and, despite the physical toll — the steroids that changed his appearance, the inability to walk as well as before — his spirit remained unbroken.

‘He was doing amazing …but he changed physically, and that was really hard for me to see,’ shares Naomi. ‘The side effects of it all were really heartbreaking, but inside himself, he was still really well.’

Through the first two months of treatment, Henry never needed an emergency department visit, and Naomi was thankful she was able to keep life as normal as possible.

‘He still kept doing things and being as active as he could. Each day we would try to get out for a walk. There was a nearby lake area and he loved being by water and nature.’

I've got it on video, Henry saying: Best Christmas ever!

- Naomi, Henry's Mum

On 24 December, Henry was able to return home, just in time for Christmas.

‘It was great,’ says Naomi. ‘I've got it on video, Henry saying: Best Christmas ever, and sharing all that he being all the things he’d wanted and loved. The kids were all so excited.’

In February 2023, Henry began Year 1 at school part-time. On February 28 (as there was no leap day that year), Naomi organised a very special 7th birthday, with a surprise dinosaur visit — a community member who owned the local bookshop in a velociraptor suit — that left Henry both delighted and amazed.

Complications

In April, following a routine dose of Asparaginase chemotherapy, Henry developed his first fever in six months of treatment. After testing and monitoring at hospital, they were unable to find a cause and so he was sent home to rest.

Over the next few days, Henry’s condition deteriorated rapidly. He wouldn't eat, complained of severe back pain, and grew increasingly unwell.

‘By Tuesday morning, he was at a stage where he couldn't even move,’ Naomi says.

The speed of Henry's decline was terrifying. Having sailed through six months of intensive chemotherapy, he was suddenly unable to function. By the time he reached the local hospital, he could barely urinate, his body was swelling, and it became clear his kidneys were failing.

Henry was transferred to the Royal Children’s Hospital, where scans revealed blood clots had formed in his kidneys. He was rushed into emergency surgery.

‘He was hooked up to so many different things, he had tubes coming out of his neck …it was just horrible to see my beautiful little boy in such a scary place,’ shares Naomi.

The journey ends

Following surgery, Henry spent the night in Intensive Care. Early the morning, Naomi says she took one look at him and knew he was not okay.

‘I pulled back the blankets and on him saw bruises all over his body. I just knew his body was shutting down completely.’

Naomi rang the family to tell them to come in, while Henry was taken for a CT scan.

‘And I just said, so that's it? And they said, we’re sorry.’

- Naomi, Henry's Mum

‘They sat us in a room to give us the results. I was like, he's not going to make it, is he? And they were like, unfortunately the clots have spread everywhere throughout his body and they're in his heart.’

‘And I just said, so that's it? And they said, we're sorry.’

Henry passed away on 29 April 2023. The little boy who had shown such strength and positivity throughout his cancer journey had been taken not by the cancer itself, but by complications from the treatments meant to save him.

Reflections

Henry continues to inspire all those who knew and loved him.

‘He was such a special unique little boy that I feel like he's now up there guiding me,’ Naomi shares. ‘And the girls, henrys younger sisters they're amazing the way they include Henry in everything each day and forever think of him.’

Naomi is now channelling her grief into advocacy, participating in events like Children’s Cancer Institute’s ‘86K for a Cure’ to raise funds and awareness.

‘I feel really like it’s Henry pushing me along,’ says Naomi. ‘If Henry can go through what he did, I can do this and try and make a difference.’

We’ve got to do better.

- Naomi, Henry's Mum

‘I want to share his story so people know that today, in 2025, there should be safer treatments — children shouldn’t be going through what they’re having to go through.’

‘What happened to Henry shouldn’t happen at all let along in this day and age. We’ve got to do better.’