Huxley's story

A rollercoaster ride

Alisha and Brendan were advised that Huxley should start chemotherapy straight away. When he initially responded very well, they were told the cancer was highly treatable and Huxley had great odds.

‘I remember telling all my family, and we felt like a weight had lifted off our shoulders,’ says Alisha.

But the very next day, the oncologist delivered the worst possible news: she had just received test results showing that Huxley had a malignant rhabdoid tumour, a very aggressive and difficult to cure cancer.

‘She told us they hadn’t had anyone make it past the age of five,’ says Alisha.

‘We were so distraught. We weren’t allowed to stay with Hux in the intensive care unit, so we’d go home and cry all night and then come back to the hospital after no sleep. We weren’t really eating. We were just in full survival mode.’

Alisha was well into her pregnancy by now and had just been told she had gestational diabetes. It was at this point that they found out through the Zero Childhood Cancer Program (ZERO) that Huxley’s cancer had been caused by a specific genetic mutation.

While this helped answer the burning question of why Huxley had developed cancer, Alisha became worried that the child she was pregnant with also carried the gene.

‘I was so anxious that I was going to have to go through the same thing again,’ she says.

Treatment

With the results from ZERO confirming Huxley’s diagnosis, his treatment became more targeted, and after a few rounds of chemotherapy, a scan revealed his lung tumour had shrunk to about half its original size.

However, a tumour was then found to be growing under his collarbone.

‘Within three days, it was like a golf ball at the side of his neck,’ says Alisha. ‘That’s when they decided we needed to start radiation.’

Every day for five weeks, Huxley was driven to hospital at six in the morning and put under general anaesthetic for radiation therapy to his chest and neck.  

Treatment took a heavy toll on Huxley’s little body. ‘He fought it by the end of it, and it was just so hard to watch,’ shares Alisha.

By this time, baby sister Lainey had been born. When she reached four weeks, she was tested to see if she, too, carried the genetic mutation that Huxley had.  Alisha and Brendan had to wait six weeks for the results.

‘I was so anxious,’ says Alisha. ’I wanted to be connected to Lainey, but I think a part of me didn’t want to fall too in love with her because my heart had just been ripped out and stomped on with Huxley, and I didn’t want that to happen with Lainey as well.’

It was a huge relief when the test came back negative.

Meanwhile, Huxley’s treatment had finished, and more waiting followed to find out how effective it had been.

‘I didn’t want to take him there because I knew that would be the end and he would never come home. It was just too hard to imagine him not being in our life and in our home and in our family.’

However, when Huxley developed facial swelling, a leaking ear, and breathing difficulties, Alisha changed her mind and called Bear Cottage. ‘They came to pick him up in their van and they were really lovely. Now I look back at it, I'm so grateful that we were there and not at home because they provided us so much comfort and support.’

The next day Huxley was unresponsive and passed away holding his mum’s hand. ‘He woke up, smiled, squeezed my hand and took his last breath. It was like he reassured us he was ok” remembers Alisha.