"My baby was born with cancer"

Clare Conroy with her son, Evander, who was diagnosed with neuroblastoma at birth

I have two healthy children, a healthy lifestyle and no family health issues, so I was completely blindsided when my third child, Evander, was diagnosed with neuroblastoma, a childhood cancer with an overall 40-per-cent survival rate, when he was just one day old.

I was well throughout my pregnancy and was working for Practical Parenting at the time, taking care of the magazine’s website. Each day in the office we’d be talking about pregnancy and babies, and as part of my job I spent a lot of time reading about pregnancy health, birth and child development. All in all, I felt pretty prepared for the latest addition to my family. I’d had the standard week 12 and 20 scans and everything was pointing to a healthy baby and normal birth. The PP team sent me off with a cute afternoon tea and everything seemed set.

A startling discovery

With my first two children, Arabella and Orson, I’d had emergency caesareans, so I was booked in for an elective caesarean at 39 weeks. The caesarean went without a hitch and after the medical staff checked little Evander they told us he was having trouble breathing. My husband, Roger, and I didn’t think too much of it. Orson had similar issues when he was born early and was given the all clear a few days later.

When we were briefed the next morning, though, the doctors told us Evander’s legs weren’t moving. An X-ray showed that one of his ribs was at a strange angle and his liver was enlarged. They then did an ultrasound and found that a tumour as big as Evander’s heart was compressing his spinal cord.

‘It felt like someone stabbed me’

Evander was diagnosed with neuroblastoma, a cancer that almost exclusively strikes infants and children. It’s the third most common type of childhood cancer after leukaemia and brain tumours, and the single leading cause of cancer deaths in children under five. About 40 Australian children are diagnosed with it each year. The shock of the diagnosis was overwhelming – it felt like someone had stabbed me. I didn’t even know children could be born with cancer!

Immediately, Evander was sent across to the children’s hospital. Roger and I met with the oncology team who gave us more clarity about the cancer and treatment. If a child is diagnosed with neuroblastoma during their first year, there’s a 90 per cent chance they’ll get rid of the tumour and it won’t come back. However, we had to wait for a particular gene test. If the ‘MYCN’ gene was found to be amplified, it would significantly reduce Evander’s chances of survival. The test sample was sent to the US and the results took over a week to come back. We were very nervous that it would be positive, but luckily the result was negative, which meant that Evander’s chances were good.

PHOTO GALLERY: Evander's fight in pictures

Heartbreak and hope

Meanwhile, we met with a surgeon to discuss removing the cancer and a neurologist who assessed the damage to Evander’s spinal cord. An MRI revealed the tumour was all through Evander’s chest, ribs and spinal cord. It was too dangerous to operate and surgery was unlikely to get all of it. Chemotherapy was the only option.

Evander was three days old when he started treatment. I moved from my hospital to be with him in the children’s cancer ward a few days later. You never imagine it could happen to your child but there we were, living in a hospital ward surrounded by children with cancer. The ward was both uplifting and heartbreaking. The doctors and staff were amazing, and we saw the strength of the other children and their families, which was beautiful to watch. It also broke our hearts. Some families were living with the worst possible news and the heartache and loss was devastating.

Chemotherapy success

It was crucial to get the tumour off Evander’s spine quickly, so our oncology team started his chemo with three-day cycles. He was responding well, so we were discharged from hospital when he was two weeks old and returned for six cycles of chemo. Each cycle lasted five days. We were told the chemo doses were so low it was unlikely the drugs would have any impact on Evander’s future growth and development.

During his chemo treatment, Evander lost what hair he had and we switched to formula-feeding as he had no energy to breastfeed. He had a central line in his chest for the chemo, which didn’t come out until he was six months old.

My biggest heartache was not being able to cuddle him without a tangle of wires. Throughout his chemotherapy Evander also had regular MRIs to assess the treatments. Each scan showed that the tumour was shrinking and lifting off his spine and after five months of chemotherapy, the treatments were successful. Our little boy is now cancer free, but will continue to have regular scans to ensure the cancer doesn’t return.

For five months, little Evander was given low doses of chemotherapy through a central line in his chest

Living in hope

We thought the cancer was going to be our main fight but, as it turns out, it wasn’t. The doctors now think Evander’s tumour developed in-utero, while his spine was developing. As it grew, it compressed the spinal cord. When the spinal cord is compressed it shuts off the blood supply and cells begin to die. They say the damage is irreparable – that Evander is paraplegic and will never walk.

Evander can’t move his legs spontaneously, but he does have some reflexes and responds to external stimulation. As his mother, these little movements give me hope there may be some sort of treatment that will allow him to walk. Researching treatments, studies and talking to experts and other families now takes up huge chunks of my time.

Nowadays our focus is on Evander’s spinal cord and talking to everyone we can about what we can do to help him. Unfortunately, that comes with a lot of government departments and red tape. I’m currently lobbying the government to provide money for children with spinal cord injuries (SCIs) through their Better Start Intervention Funding.

At the moment only four disability groups are eligible to receive funding for early intervention therapies: sight and hearing, Down syndrome, cerebral palsy and fragile X. I cannot understand why this funding isn’t available to all disabled children and can only hope that the staged roll-out of the National Disability Insurance Scheme will help to reform early childhood intervention and look to give parents of children with SCIs some financial aid.

Because we’re currently receiving no financial assistance, we’ve set up The Evander Conroy Foundation to raise money to ensure that Evander has the early intervention therapies and equipment he needs to maintain a quality of life that’s equal to our other children.

12-18 November is Spinal Cord Injury Awareness Week.