Children's Cancer Institute

When you first get that diagnosis, it feels insurmountable

- Dominique, Ashton’s Mum

Ashton was a very energetic 6 year old boy who loved getting out in nature. When he became lethargic and developed a cough, a cancer diagnosis was the last thing his parents expected.

Pre-diagnosis

Ashton and his family — mum Dominique, dad Justin, and little sister Savannah — were living on the outskirts of Sydney. Ashton was enjoying Year 1 at school, and spending his free time playing outside.

‘He was obsessed with machines and trucks and diggers,’ says Dominique. ‘He would always be digging in the dirt.’

Pregnant with their third child, Dominique was looking forward to taking maternity leave from her teaching job and spending some time at home with the new baby. ‘Unfortunately it didn’t work out that way.’

Symptoms

Ashton was very active and busy learning to ride his bike without training wheels when he became unwell with flu like symptoms. When he then developed a cough, Dominique took him to the GP, who sent him for a chest x-ray, leading to a diagnosis of atypical pneumonia.

When Ashton went back for a follow-up appointment, the GP listened to his breathing and said she thought she could hear something.

‘She got Ashton to take off his shirt, and I noticed one side of his chest was protruded,’ recalls Dominique. ‘And I remember thinking, that doesn’t look right.’

I heard the doctor gasp, and call his colleagues over.

Dominique, Ashton's Mum

Dominique and Justin were told to take Ashton to Emergency at the Children’s Hospital Westmead, where the doctor they consulted agreed to take some bloods and send Ashton for a quick x-ray, ‘just as a precaution’.

‘We went for an x-ray at 11.30 that night. I remember sitting in the waiting bay and I heard the doctor gasp audibly and call his colleagues over. Then he walked over to us, still shocked by what the x-ray revealed,’ says Dominique.

The x-ray showed that the whole of Ashton’s left side of his chest was whited out, presumably due to a buildup of fluid, and Ashton was admitted to the short stay ward.

‘Ashton presented quite well and was acting like a normal kid,’ says Dominique. ‘I really do feel like that doctor saved Ashton’s life by being so thorough and ordering those tests.’

Diagnosis

Just after midnight, a doctor woke Dominique to tell her that Ashton’s blood results had come back abnormal. Then that morning, a team of doctors came to tell her that it was looking like leukaemia.

What had appeared to be fluid on the chest x-ray was actually a giant mass which was threatening to cut off Ashton’s airway. With his breathing and oxygen levels beginning to be affected, he was transferred to the paediatric intensive care unit (PICU).

Further testing confirmed the diagnosis as T-cell acute lymphoblastic leukaemia (T-ALL).

I could hardly get the words out to tell him that it’s cancer. They found cancer.

Dominique, Ashton's Mum

‘They told me I needed to tell Ashton, because he could see how upset I was,’ says Dominique. ‘I could hardly get the words out to tell him that it’s cancer; they found cancer.’

‘Emotionally, it felt like such a blindside. I was questioning, how can he go from running around the house with his sister to being diagnosed with cancer the next day? I couldn’t wrap my head around it.’

Treatment

Over the next year and a half, Ashton underwent a total of 21 procedures. Treatment consisted of steroids to shrink the mass, and 5 rounds of chemotherapy to kill the cancer in his blood and bone marrow.

Initially too sick to have surgery to place a central line (through which medications could be administered), he required multiple cannulas — something he found traumatic in itself.

‘He ended up with four or five cannulas in him,’ says Dominique. ‘That was a really hard thing. I remember just wanting to take him and run far away from the hospital.’

Thankfully, Ashton’s Day 79 bone marrow biopsy came back showing no sign of leukaemia and in January 2023, he was declared in remission.

Side Effects

While Ashton’s cancer did respond to the treatment he was given, there were significant side effects to deal with. ‘He was so sick,’ explains Dominique. ‘He was in hospital for weeks at a time with regular unexplained fevers. He lost the ability to walk twice and was a shadow of himself.’

Ashton also got severe toxicity from one of the chemotherapy drugs, causing his kidneys to stop working and his blood pressure to skyrocket.

‘I was watching him get sicker and sicker,’ says Dominique. ‘He stopped moving, stopped eating. And the depression is very, very real when they’re going through high dose chemo. The heaviness of the situation is not lost on kids. He was struggling mentally and physically.’

‘That’s when you realise the limits of medicine… when your child is unwell and desperately needs your help, and you’re getting told: We can’t do anything, we just have to wait.’

Broader impacts

Family life was disrupted by Ashton’s treatment. ‘We were living a very chaotic, separated life,’ explains Dominique. ‘Our lives were on hold to prioritise Ashton’s health.’

With Dominique’s pregnancy nearing full-term, she became fearful that she would go into early labour due to the stress. ‘We were basically living in the Children’s hospital,’ she says. ‘One of my biggest fears was that I would be by his bedside going into labour and that I'd have to leave him.’

Do I go with my child who’s getting high dose chemo, or do I stay with my newborn child?

Dominique, Ashton's Mum

Today

Ashton is due to finish treatment (maintenance therapy) in September 2024, something Dominique says they both look forward to and fear.

‘When you first get that diagnosis, it feels insurmountable to do two years of treatment,’ she says. ‘Now we’re starting to see the light at the end of the tunnel, but that makes you feel a bit apprehensive, because you’re thinking: what if the cancer comes back?’

Ashton still has ups and downs with his treatment, but has gone back to school and is ‘just so happy to be back with his friends.’

When asked why she chose to share her story, Dominique says childhood cancer is something that needs more attention. ‘People don’t understand that the treatments aren’t where you’d think they would be. We’re still using drugs from the 1960s that were designed for adults, and they’re so incredibly toxic.’

However, she feels very optimistic about the future. ‘We are grateful for the opportunities our son has had to participate in research studies. The researchers trying to find cures for our kids are doing the most brilliant job. They are going to figure it out; I know they will.’