The 51 weeks of chemotherapy have so far prevented a relapse of the two-year-old’s rare and aggressive brain cancer, but it’s left her with a range of physical and learning disabilities.

For her parents Charlene and Justin, the gruelling treatment – and its long-term effects – have been heartbreaking. Yet it was learning that their little girl would be infertile that proved one of the hardest things to hear.

They’ve had to stand by helplessly as Kalani bravely battled through operations and hospital visits; but now she’s back home Mrs Ebbs is determined to get her own eggs frozen so her little girl can one day give birth to a child with her own genetic make-up.

“Kalani doesn’t walk or crawl, she doesn’t eat and is still slightly unstable when she sits,” Ms Ebbs said.

“All those things that parents take for granted, all those little milestones that their children achieve – she hasn’t achieved due to the location of the tumour which has also caused her eyes to turn in.

“Treatment too has taken its toll – the chemo has damaged her hearing and she’ll need hearing aids; the radiation will lead to learning disabilities.

“Radiation also means she will need to be put on growth hormones when she reaches puberty as it’s damaged her pituitary glands.

“And, perhaps the hardest thing, that broke our hearts, was that she would remain infertile. Holding my baby and knowing she’d never have a baby of her own just crushed me.

“Kalani will be able to bear children, but will need to use donated eggs so if I can freeze mine she’ll be able to have children with her own genetic markers.”

Kalani was just six months old when she was diagnosed with an Atypical Teratoid Rhabdoid Tumour (ATRT) on her cerebellum and brain stem. Genetic testing revealed it was highly unlikely that it was hereditary.

“We were told there was nothing we could have done and that she was born with a mutation in her tumour suppressor gene which predisposes her to cancer throughout her lifetime,” Ms Ebbs said.

Surgeons undertook a full resection of the tumour, leaving just a fine coating on her brain stem. Surgery to remove this coating would have killed her or left her severely impaired. The intense treatment protocol was her best chance of beating the cancer.

“Doctors have told us there’s a 40 to 50 per cent chance she will be cured,” Mrs Ebbs said. “So for us, her last chemo treatment recently was bittersweet as we’d come to rely on it, like a security blanket; feeling safe in the belief that her cancer would not relapse while she’s undergoing treatment.”

The treatment was about as intense as it gets – one chemo drug was delivered through either a lumbar puncture or straight to Kalani’s brain through a reservoir. The other eight chemo drugs were delivered via a central line intravenously to her heart and one oral drug through her nasal gastric tube. Several of the drugs were infused intravenously for several hours or up to 36 hours continuously running through her. 

“We were told it was one of the most intense chemo protocols they deliver to children in Australia,” Mrs Ebbs said.

“She was having radiation at the same time – with her radiologist telling us that in his 40-year career Kalani was the youngest patient to receive radiation to the brain.

“But while she’s gone through something no-one should have to go to, she’s mostly done it with a smile on her face. We have been truly blessed that she has such a calming presence.”

Despite that, there’s a sense of guilt for the Dapto couple – for the time their two older children have been without them; for the treatment Kalani has had to endure.

“I was trained to administer injections at home every three weeks, so it breaks my heart because when she gets older I feel like the only memory that she’s had of me over the last 15 months is just me being there through the hard times, me always hurting her, me always restraining her for treatment,” Mrs Ebbs said. “I just don’t want her to hate me and remember me that way.”

Kalani will now undergo extensive rehabilitation, and regular screening to ensure she doesn’t relapse.

“Her outlook is unknown,” Ms Ebbs said. “If she relapses there’s nothing more that can be done. She will be incurable.”

The couple is supporting the Cure Brain Cancer Foundation, with mother and daughter taking part in a heart-wrenching video to raise awareness of the vital need for further research.

The family is also raising funds for the foundation’s Walk 4 Brain Cancer, under Team Kalani and is urging other illawarra residents to join the Wollongong walk to be held at Beaton Park on November 11.

“Australian researchers really need these funds for trials to work towards a cure for our children,” Mrs Ebbs said.

“Even six months could be the difference between losing our child and a trial becoming available in that time and potentially saving our child.

“You can’t put a price on a child’s life – especially if it’s your own child – so I’d urge everyone to support the foundation and give families like ours hope.”

Brain cancer kills more children than any other disease and more people under 40 than any other cancer.

The Cure Brain Cancer Foundation aims to increase five-year survival from 20 per cent to 50 per cent by 2023. Donate to their research or participate in their fundraising activities, such as the Avant Garde ball on September 15. Details at www.curebraincancer.org.au