Charlene Ebbs begged her baby girl not to pass on her birthday, or while she was sleeping.
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But in the end, after a nearly two-year battle with brain cancer, little Kalani did both.
It was the first time her daughter had not listened to her, Mrs Ebbs said, and she believes she did it to protect her – something she’d been doing her whole life.
A life tragically taken too soon, and one that will never be forgotten.
“I think she knew I was not strong enough to witness her last breath, so she took her last breath while I was sleeping beside her, her hand in mine,” Mrs Ebbs said.
“She’s always protected me by never showing how much she was suffering through all her treatment. And on Wednesday, my birthday, she did what she could to protect me to the very end.”
The Dapto girl was just six months old when she was diagnosed with an Atypical Teratoid Rhabdoid Tumour (ATRT) on her cerebellum and brain stem.
A gruelling 51 weeks of chemotherapy – which left her with a range of physical and learning disabilities – was her best chance of beating the rare and aggressive cancer.
However just a few months after the treatment ended, Charlene and Justin Ebbs were given the devastating news that tumours on Kalani’s spine and brain stem had returned.
Kalani had further surgery in October, and in hospital created a bucket list of things to do in the time she had left. It included trips to zoos and theme parks, photo shoots and making hand moulds with her two siblings.
The community has rallied around Kalani, with the family receiving vouchers from the i98FM Illawarra Convoy proceeds and local businesses pitching in to finish off their Dapto home.
“We tried to fulfill her bucket list – we took her to Brisbane but three days later we almost lost her and she had to be transferred to Sydney children's hospital,” Mrs Ebbs said.
“The cancer was just killing her too fast and there was nothing more that could be done. We went home but it was so hard doing palliative care – being her nurse and her mother.
“I just wanted to be her mother and love her with all my might so that’s why we rushed her to Bear Cottage.”
Mrs Ebbs said Kalani’s tumours had been donated to medical research after her surgeries, and now she would continue to raise awareness and funds for brain cancer research in her daughter’s name.
“A wise person told me that you lose someone twice – the first time when they take their last breath and the second time when people stop remembering her name,” she said.
“We don’t want our baby girl to be forgotten and her suffering to be in vain. I don’t think my heart will be at peace until there’s a cure, so no other child has to go through this horrible disease.”
Kalani’s funeral will be held at St John Catholic Church, Dapto, at midday on Friday, December 21. Everyone is welcome and urged to donate to the Cure Brain Cancer Foundation.