Our experience has taught us to hug our kids that little bit tighter.
- Jane, Hugo’s mum
Hugo had problems with digestion since birth, but when other symptoms developed, it quickly became apparent there was something much more sinister going on.
Symptoms
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.
Diagnosis
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 IV neuroblastoma.
When they said they’d discovered tumours, I replied: "There must be some mistake. We’re here for a food allergy."
- Jane, Hugo's mum
Treatment
Hugo underwent six rounds of chemotherapy, and surgery to remove the peach-sized tumours. He spent three days in intensive care in a semi-induced coma.
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.
- Jane, Hugo’s mum
A brave decision
While the surgery was able to remove 95% of Hugo’s tumours, a scan revealed that his tumours were continuing to grow. He started a new treatment which gave him temporary arthritis. Then, a brave decision was made: 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.
- Jane, Hugo’s mum
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