Children's Cancer Institute

The hardest thing is watching your little girl lose the ability to do things she’s always been able to do.

- Rachael, Liliana's mum

At four years of age, Liliana had a passion for dancing, wearing dresses, and collecting small handbags which she would keep any money she was given in. Mischievous and funny, she was always the life of the party.

Symptoms

Liliana had not been feeling well for a few weeks, experiencing problems with her balance and throwing regular temper tantrums. Rachael took her to the doctor, who prescribed a course of antibiotics to treat middle ear infection. Soon after, Rachael’s mother-in-law called her at work to tell her that Liliana had fallen over again. Rachael decided it was time to go to hospital.

Diagnosis

At the Children’s Hospital at Westmead, Liliana was given an MRI scan and her parents received the most devastating news: their daughter had a brain cancer called DIPG. "They told us not to research it. But as parents, you do", says Rachael. When she met with Liliana’s treating oncologist a few days later, she was told that life expectancy was only about nine months, and that there were no effective treatment options.

You just sit there and go, "oh, so… we’re not fixing this?'

- Rachael, Liliana's mum

Treatment

Despite the terrible prognosis, Rachael remained positive, believing that Liliana could beat the cancer. And at first, it appeared this might be the case. After receiving radiation therapy, Liliana was feeling tired but succeeding in living close to a normal life, and the follow-up scan showed the cancer had all but disappeared.

But within three months, the tumour was back to its original size. Rachael begged the doctor to try something else and Liliana was given oral chemotherapy, but her condition deteriorated rapidly − so much so that family were called to the hospital to say their goodbyes.

We really thought Liliana was going to be one of the lucky ones.

- Rachael, Liliana's mum

After treatment

Everyone was surprised when Liliana started to show some improvement and was allowed to go home at Easter. Rachael resigned from work and set up a hospital bed to look after Liliana, who by this time had lost her ability to talk, walk and eat without a tube.

Miraculously, Liliana began to regain some skills, including her ability to say a few words. "The first day I heard her call out 'mum' was like… you have no idea. I never thought I was going to hear that again," says Rachael.

A few months later, though, Liliana woke with a very high fever and was taken straight to hospital. She never returned home. On 27 October 2010, she passed away, just shy of her fifth birthday.

If we don’t understand DIPG, how can we fix it?

- Rachael, Liliana's mum

Liliana's Legacy

Rachael had promised Liliana that, one day, she would have no more tumour. She fulfilled this promise, donating half her daughter’s cancer tissue to research at St Jude’s in the USA, and keeping the other half for DIPG research in Australia. Rachael was amazed to discover at this time that Australian researchers relied on the US for tumour samples. Liliana became the first child in Australia to donate her tumour cells to DIPG research.

"We need to look at research for what Liliana had," says Rachael. "If we don’t understand DIPG, how can we fix it?" With a new clinical trial now being launched in Australia for children with DIPG, Rachael says she’s grateful, although it’s bittersweet.

"It’s great that parents now have options, rather than being told: Go home and enjoy whatever time you have. I just wish the research could have been done in time for Liliana."