Children's Cancer Institute

You've got to just make the most of the moments you have

- Brooke, Grace's Mum

Grace was only eight months old when the unimaginable happened. For her parents, the experience not only opened their eyes but changed their lives forever..

Pre-diagnosis

Grace was the first-born baby for Brooke and Jock, who live on a family farm in Queensland. Brooke, a stay-at-home mum at the time, says they had a ‘beautiful lifestyle’, and spent much of their time outside with their four dogs and cat, all of whom Grace adored.

‘We were just finding our feet as first-time parents, beginning to feel like we knew what we were doing, and finally getting some sleep,’ she says. ‘Life was really, really good.’

Symptoms

Brooke says Grace was a happy and healthy baby who showed no signs of illness until she began to lose strength in her legs.

‘It just progressively got worse,’ she recalls. ‘She wouldn’t take any weight through her legs, then wouldn’t really kick her legs anymore.’

Brooke took Grace to the GP, who referred her to a paediatrician. After an initial assessment, the paediatrician booked Grace in for an MRI at St Vincent's hospital in Toowoomba.

Once the results were available, Brooke and Jock were taken to a consult room where the radiographer told them she had found a cancer-like mass in Grace’s chest.

‘My husband and I just looked at each other and cried,’ she shares. ‘We had no idea about childhood cancer, and we were scared.’

‘My first thought was, am I going to plan a funeral or a first birthday?’

My husband and I just looked at each other and cried.

- Brooke, Grace's Mum

At the hospital

Brooke and Jock drove to Brisbane that night, arriving at the Queensland Children’s Hospital about 8:30 PM. By 2:30 AM, they were being admitted to the oncology ward, an experience Brooke describes as ‘very daunting’.

The next day, Grace had surgery to release the pressure on her spine, caused by a 9cm x 7cm tumour which was not only preventing her from moving her legs but also compressing her right lung. Brooke and Jock had an anxious six-hour wait.

They think she was probably born with it.

- Brooke, Grace's Mum

It was a huge tumour,’ says Brooke. ‘They think she was probably born with it, but you couldn’t tell from the outside. There was no lump; she was just a normal baby.’

After surgery, Grace was taken to the intensive care unit, with tubes draining fluid from her back where the tumour had been removed.’

‘It was about four days before I could pick her up,’ Brooke says.

Brooke and Jock were told that Grace would probably never walk, given the damage caused by the tumour.

‘It was devastating; we were just gob-smacked,’ Brooke shares. ‘That was a really scary moment.’

Happily, this did not turn out to be the case. Almost two weeks after the operation, Grace began moving her legs again. Later, she started to crawl, then walk, then dance.

Diagnosis

At the time Grace had spinal surgery, a biopsy had been taken, and a few weeks later she was given the diagnosis of neuroblastoma.

‘They told us, given the size, it’s Stage 4,’ says Brooke. ‘But given her age and a few other factors, she was considered intermediate risk rather than high risk.’

‘That was really lucky. It was definitely a silver lining in a bad situation.’

Treatment

About two weeks after surgery, Grace had her first round of chemotherapy, which Brooke says went ‘pretty smoothly’. However, it wasn’t long before Grace was back in hospital for a five-night stay, having developed a fever.

‘That was a bit tough,’ shares Brooke. ‘She was vomiting and nauseous and tense. She woke up and cried every one and a half hours.’

Grace was put on a protocol which involved going into hospital for two or three days every three weeks to get chemotherapy. After the first two rounds, an MRI showed the tumour had shrunk by about 50%, much to her parents' delight.

‘It was amazing,’ says Brooke. ‘We were cheering.’

She was stuck to the wall in her cot for the next two days.

- Brooke, Grace's Mum

After six more rounds of chemo, Grace underwent surgery to have the tumour removed.

‘Unfortunately, they hit her thoracic duct during the removal of the tumour, so she had to go back into surgery the following day to have it stitched up,’ Brooke explains. ‘She had a chest drain coming out of her rib cage area which was horrible, poor little thing.’

Despite being told Grace would be out the next day, the drain came apart overnight. More surgery was needed to put in another drain, along with a vacuum.

‘After already spending seven days in hospital with the chest drain, she was then pretty well stuck to the wall in her cot the next two days due to the vacuum, which was a nightmare,’ shares Brooke

Treatment ends

When the pathology results from Grace's tumour surgery came in, Brooke and Jock were thrilled to learn the surgeons had been able to remove 95% of the tumour.

‘They said they were confident they got all of the active cancer cells, which was just music to our ears,’ Brooke says. ‘It was the biggest relief.’

Grace, who was now 16 months of age, had completed her treatment.

Following weekly x-rays for one month to make sure there was no more fluid in her chest, Grace had one final surgery to have her central line removed.

‘That afternoon, we did a small bellringing ceremony and drove home,’ Brooke recalls. ‘I couldn’t wait to get out.’

‘On the first of May we moved home, which was the best day ever. Grace had the biggest bubble bath, which she just loved.’

Today

Brooke says that today, Grace is back to being ‘a normal little kid.’

‘She loves being outside in the garden, picking flowers, playing with the dogs and the cat, and dancing. We have dance parties nearly every day, which is so much fun!’

Every three months Grace has scans to check there are no signs of cancer — an anxious time for the family.

‘At the end of treatment, my husband and I thought we’d be filled with so much joy ... but it was just a bit of a lull and you feel a bit nervous,’ shares Brooke.

‘You’re going home, and this cancer’s got three months to grow if it wants to, and you won’t even know until you have that scan. It’s scary.’

‘Every day I worry about relapse, but I try to remind myself to live in the now. None of us knows what’s around the corner. You’ve got to just make the most of the time you have.’

Every day I worry about relapse.

- Brooke, Grace's Mum

Reflections

Before Grace was diagnosed, Brooke knew nothing about childhood cancers other than leukaemia.

‘I had no idea about how many kids it affects, and the long-term negative effects,’ she says.

Now a supporter of Children's Cancer Institute, she wants to raise awareness and funds to support research, which she now understands is vital.

Asked what she thinks about donors who support the Institute's research, Brooke says she is very appreciative.

‘I think that they are the most generous people, to put their thoughts and funds into helping other families. It all helps keep our little kids going.’