Children's Cancer Institute

Luca will survive this. He will be the one in two that survives

- Di, Luca’s Mum

One of two twin boys, Luca was a calm, quiet toddler who seemed in wonderful health. But inside his little body, a cancer was steadily growing. Life was about to change completely, both for him and his family.

Pre-diagnosis

Growing up in Kalgoorlie in regional Western Australia, Luca loved joining his family on walks through the bush, helping in the veggie garden, and visiting the chooks. Luca’s mum, Di, describes him as a bit of a shy one, and always the watcher. ‘The twins have always been so, so different,’ she says. ‘Noah is our little firecracker. Luca is the quieter one… very cheeky though.’

Symptoms

One afternoon, not long before his second birthday Luca was out in the yard helping his mum water the garden while they waited for Luca’s dad, Jeff, to get home from work. Luca started running and slipped on some gravel. ‘He must have fallen forward and bumped his head twice, because we heard donk-donk,’ Di recalls.

Apart from some tears and a bump on his head, all seemed to be well. However, a couple of days later, Di — who worked part time as a nurse — noticed Luca’s eyelids looking a bit dark. She then saw him bump his head at Daycare and, again, he developed black eyes.

‘I worked on a surgical ward, so I talked to some of the doctors about it, and they suggested it was probably just a little bit of head trauma,’ she says.

Even so, Di made an appointment with the family GP the following week. That weekend, the family went for a long bushwalk. When they got home, Luca was out of sorts, with a low-grade temperature and drooling quite a bit.

‘We looked in his mouth and saw his second-year molars were coming through, so we put it down to that, and the bruising down to whatever was going on in his head,’ says Di. However, she was beginning to feel uneasy.

‘Part of me did think, “Oh my God, what if he has an intracranial bleed?” But I never, ever once thought cancer.’

I never, ever once thought it was cancer.

Di, Luca's Mum

When Jeff took Luca to the GP a couple of days later, she told him Luca should go to the Emergency Department at the hospital for a CT scan and a paediatric review.

At the hospital, Di says the doctors didn’t think a CT scan was necessary. ‘They didn’t want to do a CT scan because they didn’t think it was warranted, and they diagnosed him with periorbital cellulitis. They gave him a shot of antibiotics and then discharged us.’

The next morning, Luca seemed a little better, but the day after, he started behaving very strangely. After refusing his lunch and asking for an early nap, he woke up and wanted to eat. As he ate, Di says he was staring, but at nothing.

‘I’m talking to him, and he’s not responding, and that really scared the living daylights out of me.’

Di decided to take Luca back to ED and asked Jeff to come home to look after Noah. But just as she was getting Luca out of his highchair, he ‘snapped out of it’ and ran off to play.

Diagnosis

The following day, Di decided to have one-on-one time with Luca. She was driving with him to Bunnings when something prompted her to turn left to go to the hospital instead. In Emergency, Luca was examined by the senior doctor and referred to the paediatrician on-call, who happened to have done a residency with the oncologist, who turned out to be Luca’s primary oncologist.

‘She took one look at Luca and requested blood tests, an abdominal ultrasound, and a CT scan,’ says Di. Luca was taken to the paediatric ward where the manager told her that his bloods were ‘really out of whack’ and his scans were not right, and to call Jeff and tell him to come in.

‘The next minute, Jeff arrives and we’re brought into this big room. The doctors said, “We’ve found a mass,” and I screamed. I literally screamed.’

Initially, Di and Jeff were told the cancer was on Luca’s kidney. Di responded by telling the doctors they could take that kidney out, since he only needed one. ‘I said, “Please just tell me it hasn’t metastasized, or there’s more.” And they said, “There’s more.” That’s when I really broke down.’

Treatment

Luca and Di were flown to Perth Children’s Hospital, with Jeff and Noah making the 7-hour trip by car. Following tests, they were told that Luca likely had high-risk neuroblastoma.

A test known as MIBG confirmed the diagnosis. ‘I remember when that result came in, it was very confronting, because the scan lit up like a Christmas tree,’ says Di. ‘The doctor showed it to me and I said, “Please tell me the coloured bits are not the disease.” And he told me they were.’

Di looked up neuroblastoma on the Internet. ‘I remember the first thing I saw was a one in two survival rate, and I was like, no, I can’t do this, and I turned it off. It was horrific.’

Di and Jeff were encouraged by Luca’s oncologist not to focus on negative statistics. ‘She told us to think that Luca will survive this. He will be the one in two that survives.’

Luca began induction chemotherapy, and had a 6.5 hour surgery to remove the tumour in his abdomen. He then had two autologous stem cell transplants — transplants using his own stem cells once his bone marrow had been cleared of cancer cells. Finally, he was given radiation therapy followed by immunotherapy.

During Luca’s treatment, Jeff and Noah stayed at Ronald McDonald House, while Di stayed at the hospital. They sold their home remotely —which Di describes as ‘so sad’ — and bought a house in Perth. ‘It was a huge, huge change,’ says Di.

Side Effects

To help counter the toxicity of chemotherapy, Luca was given IV fluids, causing his body to become swollen. But much worse was to come. Scans revealed he had a tumour at the base of his skull which had wrapped itself around the optic nerve, causing blindness in his right eye. He also suffered severe high frequency hearing loss, caused by two of the drugs he was given.

Di describes the potential side-effects of treatment as brutal. ‘I can’t remember which chemo was, but one of the possible side effects was that your heart stops beating. It was so confronting to see that, but what was the alternative? You’re basically gambling your kid’s life.’

The side effects are brutal. You’re basically gambling your kid’s life.

Di, Luca's Mum

Several of the children Luca shared a ward with suffered terribly from side effects, with some not surviving their treatment.

‘The hardest thing for me to comprehend is when kids pass away due to treatment-related toxicity and complications,’ says Di. ‘The number of children we know who passed away because their bodies just couldn’t handle it… it’s just awful.’

‘We are so grateful for how well Luca handled treatment. He does have his hearing loss and the right eye blindness, but if that’s what we have to deal with for him to be here, we will.’

‘I just wish that every child had the same chance as Luca to be here. And that one day, treatment will be a lot easier, a lot safer. Because our kids deserve better.’

Today

Since finishing treatment, Luca has quickly gained strength and is enjoying being active again. He has grown back his hair, which Di says is now ‘beautifully soft ringlets, but like a bird’s nest!’ He has a baby sister on the way, and in February 2024 he is due to start Kindergarten.

Developmentally behind because of the time he spent in hospital, particularly in terms of speech, he is now ‘the most talkative, cheeky little boy.’

Looking ahead, he will need to have check-ups for the rest of his life, first in the Children’s Hospital and then in an adult hospital. ‘The hardest part is waiting and hoping there will be no relapse,’ says Di. ‘We know that once relapse occurs there’s literally nothing; there’s no cure. It’s just a matter of time.’

‘But if there’s one thing that Luca’s journey has taught us, it’s to make the most of every day. And if there’s one thing that we want families to get out of our story, despite all the heartache and horrible experiences, it’s that there is always hope.’