Life was blissfully routine for the Clarke family Nami, her husband Andy, and their two kids, Mannus (five) and Dulcie (three).
Mannus had started school while Dulcie’s days revolved around her friends at daycare, cooking with daddy, along with playing outside with the cats and chooks.
Like any three-year-old, Dulcie had little bouts of gastro; vomiting, followed by headaches which were apparently related to dehydration and extreme tiredness.
“The reality is, kids are always picking up bugs,” said Nami. “But I started to worry when she regularly got sick on the 5km drive to and from kindy. As soon as she was out of the car, she’d vomit. It was so bad we actually bought sick-bags to keep handy."
"Of course, whenever we took her to the GP, she would be fine,” Nami shared. “So we kept scratching our heads, filling out food diaries and checking with other parents to see if their kids were sick."
Shock cancer diagnosis
Months later, an innocent play date in the park brought the situation to a head, turning the Clarke’s world inside out.
“Dulcie fell over and said she had a sore tummy. Her skin wasn’t grazed, so I dusted her off and she went back to play,” said Nami.
“A little later she came back and said she felt sick. Now I could see a lump coming out of the right hand side of her ribcage. It was too soft to be bone, so I knew it wasn’t a break. But it was too firm to be a swelling. We went to the local hospital to get it checked out."
After hours of tests, a doctor handed Nami an envelope with the result and told her to get Dulcie to The Royal Children’s Hospital in Melbourne immediately. The problem was Dulcie’s right kidney. It didn’t look normal.
The hospital was on alert, ready and waiting for Dulcie’s arrival. From the time she was admitted through to the late evening, Dulcie underwent myriad tests. It was a process that drained both mum and daughter physically and emotionally.
"It was midnight,” said Nami. “I was introduced to an oncology specialist who told me what was happening. My little girl had a stage 2 Wilms tumour in her right kidney."
“Immediately I felt our little world had imploded. I felt panic. It was a freight train moment inside my head. It felt really noisy, like I was in my own little storm."
Thankfully for the family, a treatment program was quickly established. Dulcie started chemotherapy within four days of arrival in emergency, and later the tumour was removed in surgery. The intensive eight-month treatment saved her life.
Early kids' cancer detection
Wilms tumours can grow quite large without causing any symptoms, but there are many other types of childhood kidney cancers and they all have similar symptoms as explained by Associate Professor David Ziegler, head of The Kids’ Cancer Project Research Advisory Committee and paediatric oncologist at Sydney Children’s Hospital, Randwick.
"When it comes to kidney tumours, the three main symptoms that children will present with are a lump, blood in the urine, and tummy pain,” Professor Ziegler said. “Parents should seek immediate help if they notice blood in the urine, a lump that might be making their child’s tummy look bigger."
“Unfortunately, kidney cancer doesn’t have many symptoms, so it can be a long time before they are detected,” said Professor Ziegler. “The good news is that they have a very high cure rate, even if the cancer is discovered late."
And there’s even better news ahead. Professor Ziegler has a particular interest in the genetic causes of cancer in children and has devoted hours of research in order to discover how families at risk can be forewarned.
“Part of our research is trying to understand what causes tumours and who in the community needs to have more regular surveillance, or rather, more intense screening for them,” he said. “We’re increasingly finding that a small percentage of children have a genetic disposition for the disease, making it important to screen parents and other members of the family."
While it’s only a very small percentage, as science uncovers more about those kids with a genetic disposition to the disease, scientists will be able to find out who is at risk at getting cancer and target those children with precautionary screening.
A bright future
“Dulcie is extroverted and loves an audience for her ballet concerts and songs she makes up. This experience hasn’t knocked that pluck out of her."
"Kids miss out on a lot when they’re stuck in hospital. Swimming lessons for instance. I cried on Dulcie’s first day back at kindy, and I cried at swimming lessons," said Nami.
"Taking the kids to swimming used to feel like a chore. So much to pack and carry, mixed with the drama of trying to get there on time and the battle in the change-room at the end. Now I feel lucky I can take Dulcie and Mannus to swimming lessons."
And after all those months of vomiting after the shortest drive, Dulcie never gets carsick now.