Mother’s Day joy for family of Perth boy Cruz Kelly fighting rare brain tumour

Of all the lessons 20-month-old Cruz Kelly has taught his mum Shannon, perhaps the most powerful is the ability to seek out joy during times of deep sadness and fear.

The moments when he babbles “mama,” the bright smile that lights up his face when he sees her, or a bedtime story read at home instead of in a hospital bed are never taken for granted.

It hasn’t been easy, but as Shannon and husband Dave have navigated the living nightmare of childhood cancer they have tried to look for the light in the dark and learnt to carry competing emotions.

Such as relief that his gruelling front-line treatment for a rare and aggressive brain tumour is finally over, coupled with the constant worry that the cancer cells could return.

Or the gratitude and wonder that comes with watching their brave, inquisitive boy smiling despite the cards he has been dealt, which sits aside the grief at what he and they have lost.

So it is with a mix of hope, joy and anxiety that they are approaching a new chapter, the arrival of Cruz’s baby brother later this year.

“The last year has changed us in ways we’ll never fully be able to put into words,” Shannon said. “But somewhere along the way, life kept growing.”

The couple, whose fight to save their little boy has been detailed in The West Australian over the past 18 months, found out Shannon was pregnant as they embarked on the tough, final phase of Cruz’s treatment for an atypical teratoid rhabdoid tumour (ATRT).

Cruz was believed to be only the fifth WA child to be diagnosed with ATRT, with his parents receiving the devastating news on Christmas Eve in 2024. At four months old, he was given just 30 to 40 per cent chance of survival.

ATRT is a stage four cancer which accounts for just one to two per cent of worldwide childhood cancer cases. It is most common in children under three and forms in the central nervous system.

More than six months in hospital followed Cruz’s diagnosis as he underwent three brain surgeries, five rounds of chemotherapy and countless other procedures.

He was then able to spend more time at home as he moved onto oral chemotherapy which could be administered by his parents.

In February the family travelled to the United States for Cruz to receive proton radiation therapy at the University of Florida Health Proton Therapy Institute.

The treatment, which required Cruz to undergo a daily general anaesthetic for six weeks, is not available in Australia despite being considered the best option for childhood cancer patients due to its highly precise nature which limits damage to healthy tissue.

“What he has carried is far bigger than anyone should ever have to, and yet he has done it with so much strength,” Shannon said.

“He did so well, and because of how well he managed the treatment we were able to have time together as a family.”

That included a holiday to New York on their way back to Perth.

“Watching Cruz experience new places and moments of pure joy filled our cups more than we can explain,” Shannon said.

The couple also allowed themselves to look towards the future thanks to the beautiful secret they held tight.

“We had always wanted to give Cruz a sibling, for him to experience that joy. I hope this baby brings a lot of healing to us as a family, and I’m looking forward to the firsts that we didn’t get to experience with Cruz,” she said.

“I’m aware that this baby will probably quickly exceed Cruz in terms of development and growth, but I’m looking forward to watching them grow and learn together.

“Our hopes, our dreams, what we had envisioned was stolen away from us through our journey with childhood cancer, and I just refuse to let it steal any more of my future away from me.”

The coming months will bring new beginnings in more way than one. The family’s return to Perth at the end of March marked a huge milestone, the end of Cruz’s treatment.

The focus will now turn to regular scans to check for any signs of growth, alongside daily physiotherapy, speech and occupational therapy.

Cruz suffered high frequency hearing loss as a side effect of the chemotherapy and also struggles with eating due to his ordeal, meaning surgery to insert a feeding tube into his stomach could be required down the track.

“The reality is, even when treatment ends, it doesn’t really feel ‘over.’ There’s still so much ahead,” Shannon said.

“But for now, we are embracing this next chapter. It’s all about helping Cruz heal, grow, and find his way back to the little things that make childhood so special.

“And progressing on those key skills that he should have, but unfortunately doesn’t have due to his treatment, but also enjoying play time and family time that we missed out on.”

Dave said Shannon had become a fierce advocate, not only for Cruz but for other oncology families, “offering support, compassion and understanding to people going through the hardest moments of their lives.”

“What people often don’t see outside of the chemo and major treatments is the enormous day-to-day load she carries behind the scenes,” he said.

“Endless appointments, therapies and advocacy. She does it with incredible focus and determination, always pushing to give Cruz every possible opportunity to thrive.

“It hasn’t been an easy 20 months by any measure, but somehow Shannon has helped make it one still filled with love, laughter, and hope.

“She has never once lost sight of what matters most — loving Cruz with everything she has.”

As she prepares for that love to expand come October, Shannon plans to draw on the strength she sees every day in her little boy.

“This is a reminder that even in the heaviest seasons, there can still be light,” she said.

“We can’t wait to watch Cruz step into his new role. The bravest big brother there could be.”