The Perth family fighting to save their baby boy from a rare and aggressive brain cancer

Beautiful, bright-eyed Cruz Kelly has been fighting since before he was born. The four-month-old has endured a heartbreaking start to life and he and his parents, Subiaco couple Shannon O’Mahony and Dave Kelly, face a terrifying and uncertain future as Cruz battles a rare and aggressive brain cancer. The adored and longed-for baby boy, who weighed just 2.2kg when he was born four weeks premature last August, has undergone three brain surgeries in just three weeks and later this month will begin a gruelling, six to nine-month course of chemotherapy, followed by specialist treatment in the US, as doctors do everything they can to cure him from an atypical teratoid/rhabdoid tumour (AT/RT). Cruz is just the fifth child in WA to be diagnosed with AT/RT, a type of embryonal tumour that develops from uncontrolled cell growth left over from fetal development, and which is most common in children under three. His parents are anxiously awaiting test results which will determine whether the genetic mutation that caused the tumour is spontaneous, or inherited. If it is inherited, there is a much greater risk of the cancer returning. But as they wait in limbo for both the results to arrive and chemotherapy to begin, they are soaking in the precious moments where they are just two besotted, tired new parents, doting over their precious boy and adjusting to a new world of feeding and sleep schedules. They are also buoyed by the stories of two WA families they have been in contact with whose children have recovered from AT/RT and are now thriving. “It’s like we have joined a highly exclusive club of parents. It’s just one that no one would ever want to join,” Ms O’Mahony said. “It is torturous waiting. I just want to know what we are dealing with. I want to know Cruz has a chance and that this awful, awful disease hasn’t won before we have been given a chance to truly fight. “The only thing we can do is be brave and get all the expertise we can and make as many informed decisions that we can, to save his life.” Despite his small birth weight, and a two week stay in the neonatal intensive care unit, Cruz appeared healthy and happy in his first two months of life. But a sudden onset of daily vomiting, high fevers, weight loss and a decline in appetite in the lead up to Christmas prompted his worried parents to take him to the GP, who then referred them immediately to Perth Children’s Hospital. Upon arrival, Cruz began having seizures. “About 10 health professionals were surrounding him. Needles, blood, drips, medication, wires all over him. He was having pauses in his breathing and he was practically lifeless on the hospital bed,” Ms O’Mahony recalled. Cruz was taken for a CT scan, which confirmed the couple’s worst fears. He had a large tumour growing in his brain, which had caused a blockage in his brain and was preventing fluid from draining into his spine. “Moments later he was being whisked into theatre to have a hole drilled into his skull and have an EVD (external ventricular drain) put in,” Ms O’Mahony said. “This would relieve the pressure in his brain and keep him alive until he had brain surgery a week later.” Ms O’Mahony describes that first day in hospital — December 24, when they should have been excitedly preparing for their first Christmas as a family — as the worst of their lives. “Dave and I were beside ourselves. Broken in every way possible. I am not sure there was a minute when we weren’t crying or just holding each other in disbelief or fear,” she said. It would be the first of many procedures Cruz would undergo. On December 30, he had major brain surgery which successfully removed 95 per cent of the tumour, a procedure that took several hours as his parents waited desperately for news. “I was numb. You might have thought that sending your child off for major brain surgery would have you breaking down. I couldn’t smile, cry or feel anything. I had no thirst cues, no hunger cues. It’s like my body over six days had put layers of armour over my head and heart,” Ms O’Mahony recalled. The surgery was a success, but just days later he required a third operation to insert a shunt to drain excess cerebrospinal fluid. The five rounds of chemotherapy at Perth Children’s Hospital is expected to take up to nine months, after which the family hope to travel to St Jude Children’s Research Hospital in Florida. The Federal Government funds a handful of patients who meet strict criteria for travel to the US for proton radiation therapy, which involves more precise targeting of cancerous tissue. In Australia, patients receive standard photon radiation therapy, which can lead to serious side effects. The treatment in Florida would take place five days a week for six weeks. Ms O’Mahony said the couple, who work in the resources industry, would not be able to return to work as Cruz underwent treatment, which is likely to be followed by lengthy rehabilitation and ongoing therapy. The family have been surrounded by love and support and Ms O’Mahony praised the medical staff who have guided them through the dark days. “They are absolute gods in our eyes ... they did the most amazing job removing so much of the tumour safely. How do you thank someone adequately enough for that?” she said. “They say that when tragic events happen, it changes your perception on the world. This couldn’t be more true. “The battle ahead is long, painful, and filled with unimaginable uncertainty — but we refuse to give up hope.” To donate to Cruz’s fight against AT/RT visit https://www.gofundme.com/f/c4brn-tests