Baby Kalani, of Dapto, was six months old when she was diagnosed with a rare brain cancer. 

In May she completed one of the most intensive chemotherapy and radiation regimens ever delivered to an Australian child.

An astonishing 51 weeks of treatment left her with a range of physical and learning disabilities, including hearing loss and infertility, but Mrs Ebbs found some comfort in that horrible year, because Kalani could only be cancer-free.

On Thursday the Ebbs family's world came crashing down with news that tumours on Kalani’s spine and brain stem had visibly returned. They were growing at a rapid rate and were considered incurable this time, Mrs Ebbs said. 

“She’s basically had this cancer the whole time, it just hadn’t grown because the chemo and radiation was stopping it from growing. But it did not eradicate it," she said. 

“I was just holding on – hoping I was wrong. I’ve been preparing myself for this, but now that’s it’s actually become a reality, I haven’t been able to cope. 

“I don’t know how to let her go. I just can’t imagine a world without her in it.” 

Doctors at the Sydney Children’s Hospital Randwick are preparing to operate on two-year-old Kalani’s spine and brain later this week. 

Their aim is to remove the majority of the tumours (it is not possible to cut too close the the brain stem), then begin Kalani on a trial drug that may “give her as much time as possible”.  

A crowdfunding campaign is underway to support the family, with Kalani’s father Justin, an underground coal miner, hoping to take more time off work. 

Meantime, the couple has faced the task of readying other family members for what is ahead, including Kalani's three-year-old sister Khaleesi and her brother Kallen, 6.

“I don’t want to give my family hope, because I need to start preparing them,” Mrs Ebbs said. 

“I’ve had to explain to my kids as best I can what’s happened.

‘’I don’t want to rob them of spending as much time as they can with her. I want them to be able to remember her and love her as much as they can.

"Kallen has a very strong bond with Kalani. He understands. He's been asking a lot of questions about God and if God will look after Kalani, and it's hard for me to keep it together." 

Read more: As one Illawarra woman gives up hope, another pleads for a better way

Ms Ebbs is strong supporter of the Cure Brain Cancer Foundation, which aims to increase five-year survival rate from 20 per cent to 50 per cent by 2023. 

Her family's experience has brought her into close contact with a network of other suffering families, including several that have lost children to brain cancer this year. 

Kalani is unable to talk, but her mother is convinced the little girl has been trying to comfort her in these past few days – seeming to cling close, refusing to leave her side.

"Kalani has all the reasons in the world to just hate this world, and to just be so angry, but she’s just so calm and placid. She’s such a beautiful soul and so much wiser beyond her years. The fact that she’s the one that’s comforting me, trying to get me through this - I can’t even explain how much I love her.”