“The money, the research is vital, because we want to try and minimise the impact that cancer treatment has.”Jill, Huon's mum
Unlike many newborns, Huon was a happy, content sleeper. But soon his demeanor changed and, at just 10 weeks old, Huon was diagnosed with Stage 4S Neuroblastoma when a 5cm tumour was impeding his breathing and had spread to his liver.
When Huon was born, his parents Jill and Lindsay knew what they were doing. They checked out of the hospital early and embarked on the journey of two kids, with older brother Leo two years old.
Unlike many newborns, Huon was a happy and content sleeper, and things were looking like a nice, normal family.
From around six weeks old Huon’s demeanour changed. He wouldn’t put on any weight, he just remained stable, and he got more and more cranky. He was clingy, unsettled and a very noisy sleeper. He had started snoring. It became hard to get any happy time out of him during the day.
“I put him down to sleep, and then within like 5 minutes you could just see him startle awake and just screaming, like high-pitched squeals…we knew something was wrong.”
Concerned about the changes, Jill took Huon to numerous health professionals and doctors before she was finally given a referral to see a paediatrician. It was there that a mass was detected on his neck and, after several tests, 10-week-old Huon was diagnosed with Stage 4S Neuroblastoma. The primary 5cm tumour was impeding his breathing and had spread to his liver – causing it to swell to 5x its normal size. Huon was in enormous amounts of pain and discomfort as the tumour pushed his organs down to his groin and there was a real risk of liver failure.
At just 11 weeks of age Huon began his first chemotherapy treatment. He would receive 8 rounds of chemotherapy, one every three weeks. He also received countless blood transfusions to help him get through the treatment.
After the 8th round of chemo, Huon had an MRI scan which showed that, while the tumour had shrunk significantly, he unfortunately still had tumour cells encasing his carotid artery – which is an inoperable area. His liver had returned to its normal size, but there were still spots of Neuroblastoma, which – due to the highly sensitive area – also cannot be removed.
“When you go in you’re totally oblivious to what you’re getting into. You put full faith in the research. People count on it.”
Jill, family and Huon’s team of doctors are currently monitoring his catecholamine levels monthly and he’s having a scan every 3 month to ensure the cancer doesn’t re-spread. While the outlook is positive the thought of the cancer coming back is always in the back of their mind.
“Some journeys are awful, but our journey is positive because it’s made him healthy, better and happier.”
Our latest findings suggest that by combining CBL137 with a drug called Panobinostat, we could potentially transform the treatment of high-risk neuroblastoma, so that more children survive. Initial research shows that when combined, the two drugs working together appear to completely destroy neuroblastoma tumours in our laboratory models. Find out more.
“In my 34 years as a researcher at the Institute, this is one of the most exciting discoveries I have seen. It could be life-changing.”