Superman, Spiderman or Ironman, kids often become all types of heroes, but Mystery Man isn’t usually one of them. For three-year-old Kristian, his moniker, given to him by Dr Jordan Hansford, preceded him at the RCH, as teams from around the hospital worked desperately to determine the cause of his rapidly deteriorating little body.
At just 16 months of age, parents Steve and Maria rushed Kristian to their local hospital when he was suffering a series of tremors. From there his condition rapidly worsened.
“The tremors quickly turned into what looked like seizures, he was losing control of his eyes and the right side of his body. The doctors were throwing around a whole range of medical terms which were devastating to us, but looking back, no one had anticipated how bad it really was,” said dad Steve.
The family were urgently sent across to the RCH where the neurology team immediately got to work. Yet despite a series of brain scans, tests and treatments to eliminate all possible neurological conditions, nothing was helping Kristian. It was at that moment Dr Jordan Hansford stepped in.
“I’ll never forget the first time we met Jordan, we walked into the room and announced ‘I finally get to meet the Mystery Man!’” said mum Maria, with a smile on her face. “He immediately made us feel comfortable, and throughout our whole journey, Jordan has been incredibly kind and compassionate. His knowledge and professionalism is second to none”.
An accomplished neuro-oncologist, it didn’t take long for Jordan to identify the tumour on Kristian’s brain stem, yet the location of the tumour made it inoperable, and at 18 months of age, Kristian was too young to receive radiation treatment.
“It was the worst tumour, in the worst location, at the worst age” said Steve. “To properly treat the tumour, Jordan needed to know more about it, and only option was to take a biopsy, a potentially life threatening surgery which we knew could have a devastating outcome. We had to put all of our faith in Jordan and the teams at the RCH,” said Steve.
Luckily for Kristian, the hospital is home to some of the most highly skilled neurosurgeons in the country, and before long Jordan had a viable sample of the tumour to analyse, without any further implications for Kristian. The biopsy revealed that Kristian had a high grade glioma, a rare form of malignant brain tumour with a very low survival rate.
“Given Kristian’s age, we were hopeful through advanced testing that we might find a targeted therapy that might help him. But these tests take time and in the interim we needed to start standard chemotherapy as he was worsening day by day.”
Yet nothing was working as it should, and Kristian was almost out of time. At the 11th hour, a saving grace came in the form of the PRISM trial. Standing for PRecISion Medicine for Children With Cancer, the trial uses DNA sequencing to analyse the makeup of tumours with the hopes of identifying unique markers and novel gene fusions for targeting.
45 days later, the results were in, and Jordan received a call from one of his colleagues about Kristian’s test results. Kristian had a completely new alteration of the NTRK gene. Excitingly, an incredibly specific trial of an inhibitor of the NTRK gene was opening soon in Australia. This trial provided a glimmer of hope for the family. It provides families access to a new type of targeted medication which could have potentially life-saving implications for sick children around Australia. The family immediately packed their bags and enrolled on the study.
“By the time we left for Sydney, Kristian was incredibly ill, he had completely lost control of his eyes and the right side of his body and we knew this was our last chance,” said mum Marie.
Shortly after Kristian’s second birthday, the family were in Sydney, signing the paperwork and undergoing all the necessary tests.
When the moment came to access the medication, Marie and Steve could barely believe it, a simple bottle of medication with directions that they could administer themselves.
“After previously spending months in and out of hospital for Kristian’s treatment, and readmissions for managing the awful side effects, we could barely believe how easy this new drug was, not to mention how beneficial it was for Kristian,” said Marie.
And the benefits were practically instant. Within weeks Kristian began to regain control of his eyes, his limbs, and MRI scans showed the tumour had stopped growing.
“This drug and trial have had among the best responses we have ever seen in a phase 1/2 study. More than 80 per cent of all children are responding profoundly! Thankfully the company was very keen to open at several sites in Australia and we opened shortly after Sydney to allow Kristian and his family to return home and stay on the study,” said Jordan.
It’s been almost two years since that first trip to Sydney, and looking back at photos of Kristian during that period, you can’t help but be blown away by the difference that access to the drug has had on his life. Throughout that time, the family have welcomed one year old Rose, and together are now focusing on Kristian’s rehab and navigating life with three cheeky children.
“When Kristian was first diagnosed, he hadn’t yet learnt to walk or talk, and he’s always struggled to put on weight and muscle. Yet every day as Kristian gets stronger and more alert, Tomi and Rose are his best motivation to learn new things. He’s vocabulary is gradually growing, and just the other day he had a hydrotherapy session where he took his first step!” beamed Marie.
Kristian and his family still have a long journey ahead of them, but for the time being, access to the new drug is keeping his tumour at bay. Together they’re looking forward with an open mind, prepared to take on whatever comes next.
“We’re so incredibly grateful to have had access to the trial, and to have Jordan by our side for this whole journey, honestly we couldn’t have asked for a better doctor. There’s still a long road ahead of us, however thanks to Jordan, we know that there is one!”