With her toy bunnies, bracelets, sparkly lip gloss and backpack full of fun, little Willow is always ready for play and adventure.
So when she wasn’t her usual happy self, mum Kirsty knew instinctively that something was not right.
“Willow suddenly had a limp, and I could see she was in pain which was making her grumpy, so I took her for some X-rays,” she said.
When Willow’s condition didn’t improve, doctors sent her for further blood tests and scans in hospital.
Kirsty recalls the rising fear and panic as she waited for the results. “I was shaking as the doctor broke the news that my little girl had a tumour. My whole body froze.”
Willow was diagnosed with Stage 4 high risk neuroblastoma and was admitted to the children’s hospital for immediate treatment.
It was incomprehensible that within just four days, life as they knew it was shattered.
“I thought to myself how does that happen? She's two, almost three years old and she's got this disease that's riddled her whole body. It was all in her bones and her lymph nodes. I was in utter shock,” Kirsty said.
Kirsty then had to find a way to gently share the devastating news with Willow’s brothers Bailey and Harry. “That was the hardest conversation I’ve ever had. They were so afraid for their little sister. The three of them all have a very cute bond but this disease has just torn the whole family apart,” she said.
Willow’s treatment was unrelenting. After five rounds of chemotherapy, further scans revealed that while Willow’s primary tumour was shrinking, sadly her bone disease was progressively getting worse.
Willow needed a nine-hour surgery to remove one of her adrenal glands where the tumour was located. She was in Intensive Care, followed by more chemo, and yet more long stays in hospital.
Kirsty said it felt like their life was on hold during that time. She had to leave her job in childcare to be there for Willow 24/7.
“We couldn't go anywhere because Willow was always sick".
"All up, Willow and I have spent about 489 nights in hospital. But she's like a warrior, so strong and so stubborn. She's just got a special spark.”
During her long stays in hospital, Willow missed her brothers terribly as they were not allowed to visit due to the risk of infection.
“It was just Willow and I for days and weeks on end. Even when we were able to go home, often it was a matter of hours and we were back in hospital because of a fever or a Hickman (central) line complication. It was just relentless,” Kirsty said.
During her treatment, Willow was on fluid feeds only for four months and was on full gut rest as her body couldn't tolerate anything. Kirsty recalls the anxious days and nights with Willow’s nasogastric tube just trying to keep her hydrated. “She had veno occlusive disease and was in ICU for a week. We almost lost her she was so sick.”
Amid the family’s unimaginable pain and sadness, Starlight was there helping them cope with life in hospital.
Willow was a big fan of Starlight TV and the craft packs to keep her entertained. As soon as Willow was allowed visitors, her mum jokes that Willow made her “holler” from her hospital room door for the Captains on the ward to come and say hi!
“Willow looked forward to seeing the Captain Starlights because they always made her smile and laugh. We weren’t able to leave the ward so those Starlight visits were amazing to give her the chance to play and have fun,” her mum says.
Once Willow was well enough, she loved going to the Starlight Express Room and would spend hours playing with her brothers who especially loved the gaming section. Willow even celebrated her birthday in the Starlight Express Room one year and was given a special birthday Starlight wand.
Willow’s mum said there is nowhere else in the hospital like the Starlight Express Room. “It’s where you can go as a family – a place to re-engage together and where no-one talks about being sick. It's a really safe space for children to have fun which is so important because when kids are sick they miss out on so much.”
Now age five, Willow’s treatment is ongoing and Kirsty said the impact has taken its toll. “Getting into a routine is hard with all the medical appointments, and developmentally Willow still needs nappies and she wears hearing aids, so we try to just take each day as it comes.”
With hospital still part of their life, Willow’s family are so thankful to Starlight supporters.
”Starlight can change a child’s life. When they're sick and bed bound in hospital and the weeks are turning into months, Starlight gives kids something to look forward to."
"What Starlight does is so important-it engages the whole family, and creates a safe, happy space for the family to reconnect and for sick children to feel like children.”
