No parent should ever have to hear their child has cancer – especially before they’re born.Tabitha, Laelani's mum
Tabitha was 36 weeks pregnant with her second child – a girl – when she went for her final scan to check the baby’s weight. She knew something was wrong straight away.
Most pregnancy sonograms take 20 minutes, but Tabitha's went on for an hour and a half. The sonographer found an unusual lump in the baby’s right adrenal gland and scheduled a secondary ultrasound.
The sonographer said nothing – she just focused on the baby’s kidneys. It was at that point I began to panic.
Tabitha and her husband Jamie went together for a second ultrasound. The radiographer confirmed the presence of a mass and told them he was almost certain their daughter had neuroblastoma.
Neuroblastoma is the most common solid tumour to affect infants and young children today. It accounts for 15% of all paediatric cancer deaths in Australia and high-risk neuroblastoma has a survival rate of just one in two.
I had no idea what neuroblastoma was, but he explained it as a tumour of nerve tissues. I just kept thinking: where did this come from?
Laelani is born
Cradling Laelani for the first time, Tabitha and Jamie momentarily forgot the crushing diagnosis they’d been given a couple of weeks earlier – until the following day, when the scans and tests began.
We had doctors, nurses and professors visiting our hospital room at least three times per day doing test, after test, after test.
After countless tests, scans and ultrasounds, it was confirmed their tiny daughter indeed had neuroblastoma. Tabitha and Jamie were given two options - monitor the tumour, or remove it with surgery.
At first, I was filled with a sense of urgency – I just wanted to get the tumour out of her. But surgery would have put her at so much risk.
Waiting & monitoring
Four months later, the size of the tumour had not changed - and Tabitha and Jamie were about to opt for surgery. But in early 2014, a routine scan showed the mass was shrinking. Eight months later, it was 60% of its original size.
She screams the place down at her routine ultrasounds. It breaks our hearts every time. It's almost as if she knows what's going on.
In November 2014, the family received the report from Laelani’s latest scan with the phrase they had been so anxiously waiting to see: 'no evidence of active disease.'
Children’s Cancer Institute and Sydney Children’s Hospital, Randwick launched a major new trial in September 2014, designed to help combat neuroblastoma using an existing small molecule drug known as DFMO.
If successful, the DFMO trial could put children with aggressive forms of neuroblastoma on the road to complete recovery.
Now two and cute as a button, Laelani has been clear of cancer for more than a year. Although she will likely need monitoring for the rest of her life, Tabitha and Jamie are positive about the future and hugely supportive of the Institute.
When Laelani was first diagnosed, we kept it quiet – we felt that if we told people, it would become too real. Now, we’re giving our experience a voice and doing all we can to raise awareness.