Last summer Dayne Tyler lay on the bed next to his frail darling daughter Dani and watched her sleep.
“I knew I would give everything away to know that Dani and her big sister Tegan were happy and healthy,” recalls the doting dad, 42.
“But as I looked at Dani, all I could think was, ‘I wonder how long we have you for.’”
Remarkably, Dani doesn’t have any kidneys. The first was removed just after her second birthday, when she was diagnosed with a Wilms tumour. Although there was less than a five percent chance the cancer would affect the second kidney, in Dani’s case, it did.
Doctors removed her second kidney in February this year after discovering a tumour the size of a baseball had engulfed it. They shrunk it with chemotherapy, but decided during surgery that the organ could not be saved.
Today, the only thing keeping the shy eight-year-old alive is 10 hours of dialysis per day, which she receives in her bedroom at home. Her dedicated parents, Dayne and Kylie, work in shifts through the night to administer it while Dani sleeps.
For the Hamilton-based family, it’s been a fraught few years. They have battled Dani’s illness alongside her and in the process lost their auto dismantling business.
“We came into this world with nothing and we leave with nothing,” says Dayne. “We used to have hot rods, bikes, cars – but none of it matters any more. I’m a hands-on dad and I wanted to be there every step of the way.”
Mum Kylie, 39, agrees, “For our girls to both be happy and healthy – that’s all we need.”
When Dani was two, Dayne found her nappy full of blood. The family was sent to Waikato Hospital for an ultrasound and two days later received a call from their GP. Kylie remembers, “The doctor said, ‘Get to hospital straight away.’ I went into a daze.”
At hospital, doctors told Kylie and Dayne they’d found a Stage 1 Wilms tumour – the most common form of kidney cancer in children – in Dani’s right organ. She was a grizzly baby and doctors wonder if she’d been born with cancer.
“As soon as they said cancer, I thought my daughter was going to die,” confesses Dayne. “I’ve learned since that the diagnosis is the start of it, not the end.”
Being a long weekend, the family was told to go home and prepare to head to Auckland’s Starship children’s hospital the following Monday for surgery and chemotherapy. “It was the longest weekend of our lives,” recalls Dayne.
But Dani got through the surgery and chemo, and doctors assured the family there was only a remote chance a new tumour would affect the second kidney. For the next five years, regular check-ups at Starship showed the cancer was at bay, but Kylie found it hard to shake a nagging fear.
“Dayne would tell me to stop being negative, but I couldn’t help it,” she admits. “If Dani had a headache or a temperature, I thought the cancer was back.”
In October last year the Tyler family came down with a tummy bug. “We all got over it, but Dani didn’t,” says Kylie. “My heart sank.”
During the subsequent scan on Dani’s kidney, Kylie recalls watching the radiographer’s face closely. “He turned to me and said, ‘I’m not going to lie – I’ve seen something.’ I just fell apart.”
Kylie and Dayne were ushered into a small room and told to sit down. “They said we had to prepare for the worst,” tells Dayne. “I walked out of the room bawling, grabbed Dani and said, ‘Dan, you might not make it.’”
Although part of him now regrets being so up-front, he and Kylie have always been honest with their kids about Dani’s illness.
“You remember me saying that to you, eh Dan?” he asks, reaching for her hand.
“Yes,” she says quietly.
“Are you scared of dying now, do you think about it?” asks Dayne.
The schoolgirl shakes her head. “No,” she whispers.
Although Dani’s health has been precarious, thankfully she’s recently turned a corner and feels better now than she can ever recall. “My tummy used to hurt all the time,” she says.
Dani still needs regular check-ups but is cared for at home by Kylie and Dayne, who’ve sacrificed everything – including work – to be with her night and day. They are fundraising on Givealittle to help cover living costs and travel expenses to Starship.
Dani is mostly tube-fed and on overnight dialysis. She isn’t allowed to sip more than 500ml of fluid a day, and is on a strict no-salt, low-calcium, potassium and phosphate diet.
Kylie and Dayne have both put their hands up to donate a kidney, but testing can’t begin until their girl has been cancer-free for two years.
“She’s too young, but even Tegan would donate. She’d do anything for her little sister,” smiles Dayne.
Life now is about enjoying each day and celebrating Dani’s small successes. “Cancer makes or breaks a family and it’s made us,” says Kylie. “As we were driving back from Starship the other day, I looked at Dayne and said, ‘Don’t you feel proud we’ve got Dani this far? I do.’”
