When they said 'cancer', I freaked out. As far as I knew, there was no cure for cancerMELISSA, JOEL'S MUM
12-week-old Joel was a perfectly healthy, happy baby, with one strange symptom - he made a squeaky noise when he breathed. The first doctor Melissa took him to diagnosed bronchitis, the second doctor diagnosed croup - and the third discovered something that would change their lives forever.
Unsatisfied with the diagnoses she'd received, Melissa took Joel to a third doctor to find out once and for all what was causing the squeaky sound. They took an x-ray of Joel's chest.
Joel was in no distress, but the constant noise was making me frustrated and anxious - I needed the doctor to hear it.
The x-ray revealed a mass in Joel's chest. Melissa was told to take him straight to Sydney Children's Hospital in Westmead for further tests.
At first, no-one actually said 'cancer' - they only used the words 'mass' and 'tumour'. It didn't click.
The day after Joel was admitted, he had a CT scan for which they needed to sedate him. He was in a high-dependency ward, so Melissa wasn't able to stay with him - but as soon as she left his side, he stopped breathing.
As soon as I stepped away, people started rushing about, calling for adrenaline. My legs collapsed underneath me.
From then on, Joel was put in intensive care whenever he had an anaesthetic. Although the doctors hadn't yet done a biopsy, they told Melissa they were 99% sure it was neuroblastoma.
Neuroblastoma is the most common solid tumour to affect infants and young children – and to this day, high-risk neuroblastoma still has a dire survival rate of less than one in two. The average age of a child’s diagnosis with neuroblastoma is just two years. This makes it top priority for our researchers – and as with all other childhood cancers, we focus on progressing our discoveries into new treatments for kids as quickly as possible.
Neuroblastoma accounts for 15% of all paediatric cancer deaths in Australia - so it's critical we progress our discoveries into treatments for this disease as quickly as possible.
Joel started chemo in intensive care. Two days later, his squeaky breathing had stopped - the tumour had shrunk significantly. He continued chemo for 5 months, then had surgery to remove the remainder of the tumour.
By his first birthday, Joel was in remission. Today, he is a very social, generous 9-year-old who loves school. He visits the late effects clinic every two years to have his bloods taken and undergo counselling.
Up to 70% of long-term survivors go on to develop one or more chronic health conditions as a result of having been treated for cancer as children. The Long-term Follow-Up Project is a collaboration between Children’s Cancer Institute and the Centre for Children’s Cancer and Blood Disorders at Sydney Children’s Hospital, Randwick. The project aims to learn more about the long-term effects of childhood cancer and its treatment, and to apply this knowledge to improve the quality of life of future survivors.
The social workers remind him he needs to be careful; for example he can't smoke when he's older and always needs to wear sunscreen.