Father’s Day gift: The Perth baby who taught his parents the meaning of resilience

The first year of fatherhood looked nothing like Dave Kelly had imagined. There were no wobbly first steps, no first words and no fistfuls of birthday cake. Instead, there were almost 200 days in hospital, three brain surgeries, five rounds of chemotherapy, countless medications, infections and throughout it all, unrelenting fear. But there was also love, strength, hope and bravery in abundance. And lessons that Mr Kelly and his wife Shannon carry with them as they continue to navigate a heart-wrenching, exhausting and uncertain journey that only fellow parents of child-cancer sufferers can understand. Over the past 12 months Cruz Kelly has taught his parents what true resilience looks like. And to never take the simple joys for granted; the bubbling laugh of a baby, the afternoon sun on a picnic rug and slow, ordinary days at home. Moments like these are now possible for the Subiaco family after a relentless eight months of lifesaving treatment, following Cruz’s diagnosis in January with a rare and extremely aggressive brain cancer. Cruz was believed to be just the fifth WA child to be diagnosed with Atypical Teratoid Rhabdoid Tumors (AT/RT). When The West Australian met the family in January, Cruz, then just four months old, had undergone brain surgery and was about to begin five rounds of high-dose chemotherapy and stem cell therapy. Eight months on the blue-eyed boy still has his bright smile. And In incredible news for the family, doctors recently declared there was “no disease evident” after he finished the gruelling chemotherapy, which took a devastating toll on his tiny body. But he still has a fight ahead. Cruz is now receiving daily oral chemotherapy at home to keep the cancer at bay as he regains his strength, and he will undergo regular monitoring, scans and lumbar punctures to monitor for any signs of cancer. The next step will most likely see the family travel to Florida early next year for what they hope represents the final — but likely the most difficult — hurdle in frontline treatment: proton radiation therapy. For now, the couple is relishing being at home for an extended period after spending six of the last eight months in Perth Children’s Hospital. Last week they celebrated Cruz’s first birthday and tomorrow brings another milestone they weren’t guaranteed but are incredibly grateful for; Father’s Day. “It’s a very different first year being a dad than I would have imagined,” Mr Kelly said. “This year we had a less than 30 per cent chance that Cruz would make it, and he’s made it, through a lot of adversity.” That adversity include the horrific side effects of the chemotherapy, seen in the days immediately after when the couple had to bathe their son every six hours as chemicals excreted through his skin, and a recurring painful inflammation and ulceration of his digestive tract. Over Easter, Cruz suffered a 22-minute seizure while in PCH and was rushed to intensive care for 48 hours. Throughout it all, the couple have been astounded and buoyed by their little boy’s strength. “He’s given us a deep, deep learning about how strong he is, and the resilience kids have,” Mr Kelly said. “He’s been able to smile and engage with us when he’s going through some gnarly stuff. Although it’s been terrible, there are always silver linings, in terms of the relationships we made in the hospital, and the relationship we built with Cruz.” One of those silver linings has been the opportunity to spend more time with Cruz. Mr Kelly has taken leave from his job this year and the couple alternated nights with their son while he was in PCH. This next chapter, of maintenance chemotherapy, will also involve allied health therapy to foster Cruz’s development. “It’s a watch, wait and hope, and try and support him and give him the best chance. You can see in his face he’s happy, he’s engaged . . . he doesn’t have too much further to go where he can be healthy and happy, and that’s the main thing,” Mr Kelly said. Mrs Kelly said it was a joy to see Cruz’s personality shine through since finishing the high-dose treatment. “It’s been really special, he’s just happy to be here. He’s really, really showing us all up with his bravery and resilience,” she said. They are two qualities also embodied by his parents, who have had to learn to advocate for their son in a bewildering health system while coming to terms with his life-threatening diagnosis. “There is this mental toll that accumulates. It was just awful to go through. It’s really hard to take your blinkers off, you’ve got one goal in mind and you don’t let anything come in your way in getting to that goal,” Mrs Kelly said. “It can get very dark and deep very quickly so you have to keep your head above water. But we’ve got the easy job in this, he’s the one that’s physically going through it. The couple remain nervous about what lies ahead, but for a few hours tomorrow their day will look a little like that of many other families across WA, gathering to celebrate the fathers and father-figures in their life. “Cruz was always going to have the best of the best in Dave, and he’s been our biggest cheerleader over the last year,” Mrs Kelly said of her husband. “Most importantly he’s given us love, laughter, and space to feel. He’s been our backbone. I know whatever the outcome, Cruz is going to be so proud to have him as a dad.”