Call it gut instinct, a sixth sense or a mother’s intuition, but Aneke Tunnage believes it saved her daughter Indi’s life.
Indi, now eight, was only two years old when she started complaining about having a sore neck.
“Indi was the happiest, healthiest little girl ever,” recalls Aneke, a Christchurch mum of two. “It was a family joke that she never got sick.”
In 2018, when Indi refused to go to swimming lessons and constantly wanted to sleep, Aneke knew something was wrong. But doctors repeatedly assured the 35-year-old and her fiancé, retail manager Adam Wealleans, that all was well.
“When Indi went to bed, she’d thrash around screaming,” recalls Aneke. “One night, she fell out of bed, so I took her to the hospital. There, a doctor told me her x-rays were normal.”
Ironically, it’s the same hospital where Aneke has worked as a pharmacy technician for 15 years.
“I didn’t know this particular registrar, but I said to him, ‘I’m not leaving until Indi is seen by a consultant.’ As a mother, you know your child better than anyone else. If you think something is wrong, then you’re usually correct.”
To Aneke’s horror, doctors eventually diagnosed her daughter with Ewing sarcoma, a form of bone or soft tissue cancer that usually affects teenage boys.
“The tumour wrapped itself around Indi’s spinal cord. Doctors told us she was days or weeks away from dying because the tumour was pushing against her spinal cord. Falling out of her bed actually saved Indi’s life.”
Indi was flown to Auckland’s Starship Hospital, where surgeons told Aneke and Adam there was a 50% chance their daughter would survive surgery to remove the tumour. And if she survived, there was a high probability she would end up as a paraplegic after the operation.
“Having to put my two-year-old child on an operating table was the hardest thing I’ve ever done,” admits Aneke. “At one stage, Indi said, ‘Why don’t you love me any more, Mum?’ because I was holding her down while doctors were sticking needles into her. That almost broke me.”
After a gruelling four-hour operation, Indi surprised doctors by being able to walk, talk and eat. “Three days after surgery, she was up and walking,” tells Aneke. “Indi is our little medical miracle.”
After two weeks, the family returned to Christchurch and then following nine months of chemotherapy, Indi was given the all clear by the doctors.
“Afterwards, she got back into gymnastics, swimming and being the resilient little girl she is,” tells Aneke. “Our lives went back to normal.”
But two years later, just before the family welcomed their second daughter Ivy, Indi relapsed. Once again, Aneke’s maternal intuition kicked in.
“I just knew the cancer had come back. Indi was again complaining of a sore back and would scream in pain when she went to bed. I had to stand my ground with doctors, even filming Indi writhing around in her bed as evidence that I wasn’t crazy and that something actually was wrong!”
After she fought to get her daughter an MRI, oncologists confirmed the cancer was back. This time, though, the prognosis was grim.
“There’s no clear treatment pathway for a relapse of Ewing sarcoma, with doctors giving patients a 20% survival rate.”
Because surgery wasn’t an option this time, doctors instead signed Indi up for a clinical trial. They blasted her tumour with an aggressive course of chemotherapy and also radiation.
Aneke says, “Doctors told us Indi might need a feeding tube because she’d have ulcers in her throat from the radiation. But again, she proved the doctors wrong.”
In July 2023, they gave Indi the all-clear. But she’s not out of the woods yet – every three months for the next few years, Indi has to undergo x-rays and MRIs, and before she reaches puberty, she’ll need surgery to fuse her vertebra together.
“Without this operation, Indi won’t even be able to lift up her head,” tells her doting mum.
Aneke believes the outcome might have been very different if she hadn’t pushed to be heard at the start.
“It’s hard because mothers can feel like people are labelling them as pushy or crazy. But if you feel that something isn’t right, you have to advocate for your child and ask for a second, third or fourth opinion. Trust your instincts because you know your child better than anyone.”
Aneke acknowledges her family wouldn’t be “in the good place we are now” without the support of the Child Cancer Foundation.
“From the moment Indi was first diagnosed, the foundation gave us not only emotional support, but helped with things like groceries and petrol vouchers,” she enthuses.
“Now we want to return the favour by being ambassadors for the foundation and helping the three Kiwi families a week whose kids are diagnosed with cancer. We want to make a difference for them the way they did for us.”
The Child Cancer Street Appeal runs from 14-15 March. Donate online at childcancer.org.nz or text WDMAG to 3457 to donate $3.
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