Children's Cancer Institute

It's one of those things that you don't think is going to happen to you, until it does

- Ally, Mackenzie's Mum

Mackenzie was only two weeks old when she was diagnosed with neuroblastoma. Her first-time parents were in for a rocky ride, but say the journey only made them stronger.

Pre-diagnosis

Mackenzie was the much wanted first child of mum, Ally, and dad, Jacob, and the first-born grandchild to their parents.

‘Ever since we’ve known each other we wanted to have kids,’ shares Ally. ‘By the end of the pregnancy, we just couldn’t wait to have our baby. We were so excited for her to be here.’

Ally, a midwife, had no complications during her pregnancy, and the birth had gone well. However, Mackenzie was jaundiced and lethargic, and breastfeeding was not going as well as Ally wanted.

‘We had to stay an extra night in hospital, then go back there two times within that first week’ she says. ‘It was a challenge right from the beginning.’

Symptoms

Early on, Ally and Jacob noticed that Mackenzie’s stomach was getting bigger.

‘She was a small baby, but her tummy was big. It was quite obvious, but we just thought maybe it was gas or something,’ explains Ally. ‘As the days went on, her stomach became more distended.’

‘It was scary looking,’ Jacob recalls. ‘It was so veiny; it was purple and almost looked bruised.’

It was scary looking

- Jacob, Mackenzie's Dad

Initially, they took Mackenzie to the community clinic to see a nurse, who suggested they were overfeeding her.

‘She’d put on 600 grams in five days, when a newborn should only put on about 100 grams in a week,’ says Ally.

A few days later, Mackenzie’s stomach was even bigger. Ally sent a photo to her GP, who said she would call the Children’s Hospital and see what they recommended.

‘She called me back and said, “Look I’m sure everything’s fine, but the doctor there said just bring the baby in and they’ll do a check.” So, we were like, yep, let’s just go.’

At the hospital

At the Children’s Hospital, Mackenzie was taken straight through Emergency. At first, the doctor thought she may have a bowel obstruction, but an x-ray showed this was not the case.

A cannula was inserted into her vein — a procedure which Ally describe describes as ‘horrible’. Next came an ultrasound.

‘From there, they took us into this little room and closed the door. And we were like, this can’t be good,’ says Ally.

‘All I remember is hearing the words “tumour” and “oncology”. You never think you’re going to hear those words about your own child. They’re like the two scariest words that you could hear.’

When your world has just been turned upside down, half an hour feels like an eternity

- Ally, Mackenzie's Mum

Ally and Jacob were told that a tumour had been found, and that Oncology were going to come down to speak to them.

‘It was probably only half an hour, but it felt like forever,’ says Ally. ‘We just sat there crying. When your world has just been turned upside down, half an hour feels like an eternity.’

Finally, the oncology team arrived. Ally and Jacob were told that Mackenzie had tumours which had spread, and they were going to admit her.

‘When we finally got to the ward, it was like 11.30 at night,’ recalls Ally. ‘We had nothing on us; we thought we’d be home for dinner. We ended up staying two weeks.'

Diagnosis

Ally and Jacob decided they needed to face the difficult task of sharing the news with their families.

‘I’ll always remember that phone call to my parents,’ shares Ally. ‘I didn’t know what to say. It was such a huge thing for them to hear.’

At the time of admission, doctors had told Ally and Jacob that Mackenzie’s tumour was most likely neuroblastoma, but that more testing and scans needed to be done. Two days later, the diagnosis was confirmed.

Testing had revealed that while Mackenzie’s primary tumour was in her adrenal gland, the cancer had spread throughout her liver and into her bone marrow. Despite this, her young age meant her prognosis was favourable.

‘They said to us, if you’re going to Google, you need to type in: neuroblastoma in the neonate’, says Ally. ‘Make sure you research babies, because the survival rate if you’re under six months is completely different to if you’re older.’

‘Mackenzie’s prognosis was good — the survival rate was around 97%.’

I’ll always remember that phone call to my parents

- Ally, Mackenzie's Mum

Treatment begins

With Mackenzie’s stomach growing ever bigger, and her cancer having spread so much and so quickly, Ally and Jacob were advised that treatment needed to begin straight away. A central line was put in and the first round of chemotherapy began.

Because fluids in and fluids out needed to be carefully balanced, Mackenzie had to be bottle-fed with expressed breastmilk, not breastfed ? something Ally found very disappointing. Mackenzie also needed a catheter put in, which Ally says she really didn’t like.

‘She was definitely uncomfortable,’ she says. ‘Even trying to hold her was difficult. She’s got the central line; she’s got a catheter. She had cords coming from everywhere.’

During this challenging time, Ally says she and Jacob coped by working closely as a team and focusing on taking one step at a time.

‘We’ve always remained positive, and I think that’s how you have to be when it’s your child.’

Even trying to hold her was difficult

- Ally, Mackenzie's Mum

Joining Zero

At the suggestion of their oncologist, Ally and Jacob agreed to sign Mackenzie up to the Zero Childhood Cancer program (ZERO). This meant that genomic testing and analysis would be done to try to find out as much as possible about her cancer.

‘We were like, yes, we definitely want to do that,’ recalls Ally. ‘We wanted to make sure the cancer wasn’t genetic, and they also said they can use the results to work out her treatment.’

The ZERO results confirmed that Mackenzie did not carry genetic alterations associated with high-risk neuroblastoma, meaning that her current treatment plan would remain unchanged.

‘It also said that the neuroblastoma wasn’t genetic,’ says Ally. ‘So we’re super glad we did that.’

Treatment Continues

After a short break to spend Christmas with the family at home, it was back to hospital for the second round of chemotherapy.

‘We knew that after the second round, we’d have the next lot of scans done,’ says Ally. ‘I remember feeling sick the night before. And then when we got the results, the cancer was unchanged. That was really, really hard. We were like, oh my God, can’t believe we have to put her through that again.’

Thankfully, after another two rounds, Mackenzie’s tumour had reduced in size by 50% and no more chemotherapy was required. Every scan since, the tumour has continued to shrink.

‘She actually still has the tumour in her adrenal gland,’ explains Ally. ‘Her liver is clear, her bone marrow is clear, but she still has the main tumour. They said it could take years for it to reduce to a point where it doesn’t show up on the scan anymore.’

In November 2024, almost a year after diagnosis and just a week before Mackenzie’s first birthday, the family gathered for an ‘end of treatment bell ringing’ ceremony at the hospital.

Today

Today, Mackenzie continues with three monthly checkups. At home, she is ‘a busy little bee.’

‘She’s making up for lost time,’ says Ally. ‘She keeps us on our toes, that’s for sure! So happy and cheeky and playful. We’re just so thankful that she’s doing so well.’

Looking back, Ally says she feels sad that she and Jacob missed out on “that newborn bubble” special time at the beginning of Mackenzie’s life when they could just enjoy being a family. ‘We were so excited for her to arrive. Then two weeks into new parenthood, I feel that something was kind of stripped from us. And we’re living in a hospital.’

On the plus side, however, she feels they’re more resilient. ‘Now we’ve gone through the hardest thing that parents can ever go through, I feel like we can get through anything.’

‘We feel so close, the three of us, and we just feel so lucky every day.’