Our experience has taught us to hug our kids that little bit tighter.jane, hugo's mum
Jane and Jason’s third son, Hugo, was diagnosed at birth with a digestive disorder and trips to the doctor were common. So, when he started struggling to breathe one day when he was 10 months old, Jane assumed it was a food allergy. She decided to take him to the doctor for peace of mind.
Jane was referred to Sydney Children’s Hospital for a bowel ultrasound and was informed Hugo had five tumours – one behind his lung and heart, two on his adrenal gland and one wrapped around his spine: stage four neuroblastoma.
When they said they’d discovered tumours, I replied: “There must be some mistake. We’re here for a food allergy.”
Hugo underwent six rounds of chemo and surgery to remove the peach-sized tumours. He spent three days in intensive care in a semi-induced coma.
Children’s Cancer Institute researchers have undertaken pre-clinical studies on a new targeted drug, CBL137, which resulted in the highest levels of response we have ever seen in our laboratory models of neuroblastoma.
Seeing him in that state was just heartbreaking. He had two cuts on his stomach, he was bloated and his eyes were puffy from the surgical tape.
An unusual case
The surgery removed 95% of Hugo’s tumours – however a scan revealed his tumours were continuing to grow. He started a new treatment which gave him temporary arthritis - then, doctors made a brave decision: to stop treatment altogether.
We’ve accepted that Hugo will never be in remission. They’ll never be able to remove 100% of his disease.
Today, Hugo is an incredibly cute and boisterous six-year-old who loves playing with his older brothers Rex and Alfie. However, his family faces ongoing uncertainty - because treatment at this stage could be more toxic than the cancer itself.
Planning has commenced for a first-phase clinical trial of CBL137 for children with refractory cancers. When used on its own or in combination with conventional therapy, CBL137 could be a highly promising new approach to managing the growth of neuroblastoma tumours.
Children with cancer are currently treated with adult cancer drugs, because that's all that is available.