“Sometimes a mother’s instinct is the only thing standing between reassurance and reality."

 

Bella was just shy of her first birthday when I first felt that something wasn’t right. She was unsettled, not eating well, sleeping poorly and far more clingy than usual. Multiple visits to the child health nurse and the GP followed but my concerns were brushed off. As weeks went by with no improvement, I became increasingly worried and decided to take her to the hospital.  Again, I was told not to worry and we were sent home. 

But I couldn’t shake the feeling that there was something wrong. 

That evening Bella began to get increasingly distressed and began having trouble sitting up and crawling. The following morning I took her back to the hospital and insisted she be admitted. 

“I just needed someone to take us seriously.” 

 

That decision changed everything. 
 

A scan revealed a cyst on Bella’s brain. Within hours we were on a plane to Brisbane with the Royal Flying Doctor Service. That was the end of our normal life. The date was 1 September 2016. Bella was 13 months old. 
 

Scans in Brisbane revealed the devastating reality we were facing - Bella had a large ‘abnormality’ affecting most of the left hand side of her brain and it was under an extreme amount of pressure.   This was the reason she was so distressed – she was in an extraordinary amount of pain. We were told afterwards that a catastrophic outcome would have been the result if I had not insisted on her admission for observation. 
 

Emergency surgery followed. Then more surgery. And then more. In the space of a week Bella had 4 surgeries, including an attempt to remove the tumour which almost cost her life. The surgery had to be abandoned due to excessive blood loss and the entire volume of blood in Bella’s body was transfused three times in a desperate attempt to save her. She was alive but only just. A stroke had paralysed her right side, she could not swallow, sit up or talk and it was apparent she could not see to her right side. 
 

Bella was diagnosed with anaplastic ependymoma, a grade 3 malignant brain cancer. It is the worst form of ependymoma and has the worse prognosis as it is aggressive and difficult to treat.
 

Over the next few months Bella was given high-dose chemotherapy; a protocol where she was given methotrexate, vincristine, cisplatin and cyclophosphamide. She sailed through the first round, struggled with the second, and was horrendously ill during the third round. 
 

In February 2017 Bella underwent her fifth surgery, after which we were told had achieved a gross total resection. Scans showed no visible tumour. 

“We allowed ourselves to breathe.”

 

Radiation was recommended but we ultimately declined due to the high risk of severe and permanent damage to Bella’s developing brain. We returned home to Gladstone in May 2017, cautiously optimistic for the future. 
 

Our optimism was short-lived with Bella’s scans in August 2017 showing the tumour had returned. After a failed attempt to remove the tumour, we were told it was no longer curable. We were advised to go home and make memories. 
 

The worst part? Bella was still happy. Still laughing. Seemingly healthy. “That made every decision even harder.”

 

Refusing to accept there were no options left, we sought another option and travelled to Sydney to see neurosurgeon Dr Charlie Teo. He reviewed Bella’s scans and was confident the tumour could be removed but he was clear about the risks. Bella might not survive the surgery.

In October 2017 Bella underwent further surgery under the skilful hand of Dr Teo. Against the odds, the tumour was successfully removed, however, complications followed. Further emergency surgery was required to put in a shunt. And then, miraculously, within a couple of short weeks Bella was back at home jumping on her trampoline. 

Since that time, Bella’s scans have remained clear. 

Today, Bella lives with permanent impacts from both the cancer and the treatment. She has a visual impairment, weakness on her right side, and cognitive impairment. The prospect of further secondary / late effects keeps us vigilant. Life looks different now. Dan and I are different people. But she is here. And we think she is truly remarkable. 
Bella’s story is not unique. Too many families walk this path. Childhood brain cancer remains underfunded, under-recognised and devastating in its impact. 

Bella the Brave exists to make sure these stories are heard, awareness is raised and to help try to find a cure for brain cancer.

Because children should never have to be brave just to survive.
 

- Robin Bates