Children's Cancer Institute

He was just a little baby starting to know what life is

- Kelly, Ryder's Mum

Ryder’s parents’ worst fears were realised when their baby boy was diagnosed with an aggressive brain tumour — the same cancer his mum’s sister had died of in childhood. Life was about to get very, very tough.

Pre-diagnosis

Ryder was 10 months old and just learning to crawl. His mum, Kelly, was about to go back to work having been on maternity leave, while dad, Alan, was working full-time. Big sister Charlise (Charlie) was three.

‘We were a happy little family, and Ryder was just a little baby starting to know what life is,’ says Kelly.

Having been in COVID-19 lockdown since about a month after Ryder was born, segregated from family and friends, they were enjoying being able to get out and about and socialise again.

‘For so long, it was just us and the kids. Charlise wasn’t at school yet, so I basically had the kids on my own.’

Symptoms

Kelly says Ryder got sick just as she was about to return to work.

‘He seemed to just be sick all the time, she says. ‘Then we took him to the doctor and that’s when it all started.’

First, it was just that he seemed a bit unwell and developed a bit of a cough. Then, he developed facial palsy on one side of his face. One eye didn’t close when he cried, which his parents thought a bit strange.

‘I look at pictures from a month before he was diagnosed, and he looked normal,’ shares Kelly. ‘There were no signs up until a few weeks before we took him to the doctor.’

‘We took some videos of when he was crying to show the doctor. And he was like, it's not normal, go to Wollongong Hospital and make sure you don’t leave without a scan.’

Go to hospital and make sure you don’t leave without a scan

- Kelly, Ryder's Mum

At the hospital

Kelly says that from there in, things started to happen very quickly.

‘Ryder’s face really dropped, and he had no movement on one side of his face. I was really worried because my sister had a brain tumour. She was diagnosed at two and passed away when she was 7 and I was 10.’

‘I had in the back of my mind that I'd have kids with it. So I was like: Oh no, it's going to happen.’

Ryder had an MRI scan and was admitted to hospital. Late the next night, a doctor came to see Kelly and told her the news that it was a brain tumour. The next day, they were transferred to Sydney Children’s Hospital and Ryder was put in the neurosurgery ward, under the care of Dr Marion Mateos.

‘It was a big blur, meeting all the doctors and the neurosurgeon and the oncologist and the whole team,’ she shares. ‘Then Ryder was booked in for surgery.’

I was like: Oh no, it's going to happen

- Kelly, Ryder's Mum

Surgery

Ryder had brain surgery to investigate the condition of his tumour. Unfortunately, it was found to be growing in among vital nerves and close to the brainstem, so could not be safely removed.

A biopsy was taken and a sample sent for analysis by the Zero Childhood Cancer Program (ZERO) team.

‘They said it was in a bad spot,’ Kelly says. ‘We couldn’t do too much because we didn't want him to have lifelong problems.’

As a result of the surgery, Ryder experienced vocal cord palsy, meaning that he couldn’t swallow properly and had to have a nasogastric tube put in.

‘He was one hundred percent tube fed for about two years,’ says Kelly. ‘Afterwards, he just didn’t know how to swallow. We went to the feeding clinic and the dietician had to teach him how to eat food.’

He didn’t know how to swallow

- Kelly, Ryder's Mum

Diagnosis

When the results of the ZERO testing came in, Kelly and Allen were told Ryder had a rare, fast-growing cancer known as atypical teratoid/rhabdoid tumour (AT/RT).

Charlie then had genetic testing to find out if she carried the gene mutation linked with ATRT. Much to their relief, she did not.

Kelly says she thinks about how things could have been different for her sister, had doctors known back then what they know now.

‘My mum asked if it was genetic and they just said, No, it’s bad luck. There was no testing for it, they didn’t know about ATRT back then.’

She also wishes she had known more about it before Ryder was born.

‘I wish I’d known more before I had him because then things would have been a lot different.’

I wish I’d known more before I had him because then things would have been a lot different

- Kelly, Ryder's Mum

Treatment begins

Ryder began intensive chemotherapy, which Kelly describers as ‘brutal.’

‘We were pretty much in-patients at the hospital the whole time. We’d come out for a couple of days, then be in again for weeks because he just got really sick.’

Ryder also received radiation therapy under general anaesthetic five days a week for six weeks — treatment that Kelly says the radiation oncologist was not keen on because Ryder was so young [14 months].

‘They didn’t really want to do it, but basically, we had no other option.’

‘We’re thinking, if he gets side effects from the radiation, then we'll deal with it. But right now, we may not even get to the point where we have to worry about side effects.’

During this time, Ryder’s dad Alan and sister Charlie stayed at Ronald McDonald House, with Kelly and Ryder joining them on weekends when Ryder’s health allowed it.

It’s very hard for siblings

- Kelly, Ryder's Mum

‘It’s very hard for siblings,’ Kelly shares. ‘Charlie and Ryder didn't get to see each other for so long.’

Having had her own sister die from cancer when she was young, Kelly says she feels a lot of empathy for her daughter.

‘I really feel for Charlie because I know what it’s like to go through that with a sibling.’

‘I feel for my mum too, because she went through it with her child, and now she’s going through it with her grandchild.’

Targeted therapy

Happily, every scan showed that Ryder’s tumour was shrinking and in February 2023, his tumour, now dead, was able to be removed by surgery.

Chemotherapy continued until August, then, after a break, Ryder was started on a trial drug called Tazometastat for 12 months — a targeted therapy given to prevent the tumour from growing back.

‘Even though we wanted the tube out, we wanted him to enjoy life, it was nice to know he was still having treatment,’ says Kelly. ‘We thought, we’ll do this and just hope it’s working.’

Kelly and Alan are now taking things three months at a time and ‘seeing how it goes.’

Today

Today, Ryder is full of energy and making up for lost time.

There are no signs of facial palsy or any other treatment related damage. Every three months, he has his kidneys scanned to check for potential side effects, and will continue to have this until he’s 5 years old as there is a chance that tumours can grow in his kidneys as well.

‘He’s a very happy kid,’ says Kelly. ‘I think we can all learn something from him.’