Innovative treatment could save boy who was once given just months to live

Marie Kozul found herself living every parent’s worst nightmare when her healthy baby boy was diagnosed with a rare brain tumour.

When he should have been learning to walk and talk, Kristian was instead battling to survive and hospitalised at least once a fortnight as he underwent rounds of chemotherapy.

Ms Kozul realised something was wrong when he was just 15-months-old and suffering from seizure-like symptoms.

“It took a while to get a diagnosis for him, until they transferred us to the oncology unit and we met Dr Jordan Hansford,” Ms Kozul told Yahoo7.

“I remember walking in there for the first time and Dr Jordan said: ‘so here’s the mystery man’.

“No one could figure out what was wrong and I remember sitting down wondering whether this doctor would be able to help us.”

A biopsy found Kristian had Anaplastic Astrocytoma grade 3 glioma in his brain stem and Kristian began intensive chemotherapy.

After five months of torment the Melbourne family discovered because it was such an aggressive tumour, the treatment didn’t help and instead the tumour grew bigger.

Kristian was given less than year to live, a grim outcome for a toddler who should have a full life ahead. The family was out of options until Dr Hansford approached them about a genetic sequencing test as part of the Zero Childhood Cancer program.

The test meant doctors could target specific tissue and try and determine the cause of his tumour.

“We agreed because we had nothing else,” Ms Kozul said.

“Kristian was too young for radiation.”

The test identified a rare genetic mutation and the discovery helped doctors find a treatment that could specifically help Kristian.

There is currently a trial open at Sydney Children’s Hospital for a drug that targets his particular genetic change.

Dr Hansford told the family participants had so far responded well to the medication so they enrolled Kristian in the trial.

Ms Kozul explained with Kristian’s particular gene, it grew a partner and a mass evolved from it. The medication being trialled inhibits the gene from being active and stops feeding it.

‘He’s defied all the odds’

Things are looking up since two-and-half-year-old Kristian started the trial in November.

“We started him on this liquid – it’s like Panadol, it’s the best way I can describe it,” Ms Kozul said.

“He has it morning and night and in comparison to chemo – that was horrendous. We didn’t go more than a week or two without a hospital admission, that’s how unwell it was making him.

“But we started this trial treatment and he’s tolerating it really well. The first MRI scan at the end of December showed the tumour had stopped growing and had shrunk a little bit. We are absolutely thrilled. Up until that stage, it just kept growing and growing.”

Kristian is now approaching nine months since starting the medication and his tumour remains stable.

“It hasn’t gotten any bigger and it’s really quite amazing just with how he’s presenting in himself. He’s 10 times better. He’s growing, putting on weight and has developed mentally. He’s behind, but everything he went through last year, basically all the energy he had was about survival,” Ms Kozul said.

“We continue the treatment today and he’s a strong little boy. He’s a fighter. He’s defied all the odds and even though he’s been sick along the way and there were so many close calls, he just comes out of it.

“The outlook is positive but we just have to take it day by day.

“Nothing is guaranteed but obviously it’s looking very positive. The tumour is stable and not growing or looking as prominent and he’s wonderful, he’s getting back to his old jolly happy self. We are extremely hopeful and positive it will continue to do what it’s there to do.”

This week the Federal Government announced it would funnel $5 million into the Zero Childhood Cancer program which will go towards helping other young people like Kristian.

It’s the first instalment of the government’s brain cancer mission. In October last year, the government established a $100 million fund for brain cancer research over the next 10 years.

“It is the precise genetic targeting of the particular cancer in the particular child that enables us to make sure the treatment is key,” Prime Minister Malcolm Turnbull said during the announcement.

Dr Hansford said: “We really are on the cutting edge here, and it’s only through the support of government and philanthropy that we can make it happen.”