Lola wanted to be a nurse, to help other sick children.
- Penny, Lola’s Mum
A very shy and sensitive little girl, Lola surprised everyone with her response to cancer. She faced her fears on her own terms, and never complained or asked, ‘Why me?’, showing courage and wisdom well beyond her years.
Lola was a sweet 6-year-old who loved spending time with her family, especially when it came to outings on the family boat or going out for dinner. She loved giving her chickens cuddles and doing flips on the trampoline like her big brother, Harry. But most of all, she loved being in the water. ‘She just loved swimming,’ says mum, Penny. ‘She was like a mermaid.’
The family was holidaying in Queensland when Penny noticed that Lola had a bit of a crooked smile. Initially, she put it down to anxiety since Lola often felt nervous.
‘I said to my sister, who’s a nurse, “Does Lola’s face look a bit funny?” And she said, “Yes, I can see it.” She told me not to worry too much but maybe to just go see a doctor.’
When the family returned from holiday and Lola went back to school, a few more worrying signs began to appear. She woke up one morning and vomited, came home from school with a headache, then began to tilt her head — something Penny later learned can be a sign of a brain tumour.
I said to my sister, ‘Does Lola’s face look a bit funny?’ And she said, ‘Yes, I can see it
- Penny, Lola's Mum
Lola’s GP put the family in touch with a pediatrician who agreed to see Lola straight away. ‘He took one look at her and said, “You need to take her to the Children’s Hospital,” recalls Penny. ‘He knew there was something not right.’
Penny and Shane took Lola to Emergency at Sydney Children’s Hospital where blood tests were done. When the results came back normal, a diagnosis of Bell’s palsy was suggested.
A week later, still concerned about Lola, they were back at the hospital. This time they saw a neurologist, who booked Lola in for an MRI later that night.
It was the morning after the MRI that Penny found out Lola had a brain tumour. ‘I saw the neurologist coming to our ward and I knew it was bad,’ she says. ‘There were about five people. They sat me down and said they had discovered a large mass, and that’s when I heard the words “brain tumour”.’
At the time, Penny was primary carer for her mother, who had motor neuron disease, and her husband, Shane, was suffering from chronic fatigue. ‘I remember the neurologist said to me, “I’m hoping there’s no one in your family that suffers from mental illness or depression, because this is going to be the hardest thing you’ll ever have to do.” And I thought: Oh, great.’
The neurologist said to me, ‘This is going to be the hardest thing you’ll ever have to do’
- Penny, Lola's Mum
While Lola happily coloured-in pictures in the toy room, Penny met Shane outside the hospital and shared some tears as they grappled with the news.
‘Lola was oblivious to it all,’ says Penny. ‘I had to walk in there knowing that she had this terrible thing in her head. That was a really hard moment.’
‘There are three subtypes of ATRT, and unfortunately Lola had the most aggressive one,’ says Penny. ‘I don’t think there are any children that have survived that particular subtype.’
Penny and Shane consulted neurosurgeon Dr Charlie Teo, who was confident of removing the whole tumour and offered to operate on Lola first thing the next day. After 8 hours of keyhole surgery, the tumour was gone and five days later, Lola was back home. Unfortunately for the tumour to be completely removed, Dr Teo had to sever Lola’s facial and hearing nerves on her left side.
‘It was very scary after surgery, with Lola having trouble standing and walking,’ Penny says. ‘But they said the quickest way for her to recover was for her to be in familiar surroundings, so we took her home, and she was walking and running within a week.’
More decisions about the best course of treatment followed, with Penny and Shane deciding to go with the most aggressive protocol at Sydney Children’s Hospital: four cycles of high dose chemotherapy, six weeks of radiation, and 12 cycles of maintenance chemotherapy, over a total of 52 weeks.
Despite being on the most aggressive treatment protocol, Lola generally handled treatment well, although there were certainly tough times. ‘The first few months were the hardest,’ says Penny. ‘We’d come home, then a couple of days later we’d be back at the hospital because she was so sick with side effects.’
At one stage, Lola stopped eating and had to have a nasogastric tube put in, which Penny describes as traumatic. ‘That was her lowest point. She was really sick, it was COVID so she couldn’t have visitors, and we were in isolation because of a bacterial infection.’
We’d come home, then a couple of days later we’d be back at the hospital because she was so sick with side effects
- Penny, Lola's Mum
Then it was onto radiation therapy, which Penny says provided some relief from the chemo as well as a chance to spend time together at home as a family. It was also an opportunity to do some homeschooling.
‘Lola learnt how to read, spell and do maths, and was basically at the same level of her classmates even though she didn’t attend school. We discovered our little girl was quite bright. She talked about wanting to be a nurse to help other sick children.’
In December 2020, Penny and Shane decided not to put Lola through the final round of maintenance chemotherapy. ‘We’d had enough, and the doctor said he was happy with that decision because Lola had had so much chemo already,’ Penny explains.
‘Sometimes I think: why did we do that? If we’d done that last cycle than perhaps Lola would still be here. But then I think, you know what? That was the time when she managed to go back to school, she made new friends and she got to be a little girl again.’
‘She got her central line out, and we were able to go to the beach and for her to swim and have showers again. It was the Christmas holidays and she’d made some new friends. She was just so happy.’
If it had hit maybe a year later, at least her body would have been a bit stronger
- Penny, Lola's Mum
Just two months after treatment finished, with Lola symptom-free and ‘absolutely thriving’, Penny and Shane were shocked when a routine MRI reveal she had relapsed. As well as three or four tumours on her spine, Lola was found to have cancer cells in the fluid inside her spinal column.
‘We were told with AT/RT that there is a high chance of relapse, so we were ready for relapse… but we just weren’t ready for it to be so soon. We didn’t have time to even breathe,’ says Penny.
‘If it had hit maybe a year later, at least her body would have been a bit stronger to deal with more treatment. But she had just started to recover and get healthy again, and it wasn’t enough time.’
Since Lola had already had the most aggressive treatment, the doctors advised there wasn’t much that could be done except radiation to the spine. At this stage, the focus shifted from cure to quality of life, and the palliative care team was called in.
Penny says they felt defeated. ‘It felt like we had everything against us. Lola had the most aggressive subtype, then we didn’t have enough time before relapse. We threw everything at it, but we just felt like she was doomed from the start.’
Radiation therapy began the next day, but. Lola’s condition deteriorated. ‘Lola was getting sicker and sicker, and I was trying to tell them, but they just said it was all part of the effects of radiation,’ says Penny. ‘We didn’t know at the time, but when she was getting radiation to the spine, the cancer had spread to her brain. By the time we found out, it was too late.’
The Final Chapter
For Lola’s 8th birthday, with the doctor’s blessing, the family went on holiday in Queensland. But during the week, Lola started to lose her balance and couldn’t walk properly. At the local hospital, she was diagnosed with hydrocephalus — swelling on the brain.
Penny and Shane decided to take Lola back to Sydney. Here, an MRI revealed she had cancer cells throughout her brain. The next day, Lola had a massive seizure in hospital and stopped breathing before being revived by staff.
‘They told me that she wasn’t going to last the night,’ Penny says. ‘Shane and Harry came in, then my sisters came from Queensland. Everyone was in there to say goodbye. But Lola stayed with us that night, and the next day she was wondering why everyone was there.’
Penny, Shane, Harry and Lola moved to the children’s hospice, Bear Cottage, where they spent a week with Lola before she finally passed.
Penny says she treasures the special bond she was able to form with Lola during her cancer journey. ‘I know it sounds terrible, but I feel lucky that I got to spend that time with her in hospital. We became best friends. Getting to know her and just watching her blossom, and her courage… it was very inspiring.’
The family is determined to come up with different ways of keeping Lola’s memory alive, and for the past two years has done the Sutherland to Surf funrun — along with a tribe of supporters — to raise funds for children’s cancer.
Looking to the future, Penny says more treatment options are desperately needed for children who relapse. ‘For us, there weren’t any options really. It was just: she’s done the treatment, it didn’t work, sorry.’
Better yet would be to have more effective options from the start. ‘As soon as our child gets diagnosed, we should have targeted drugs for their particular tumour,’ she says. ‘We need these options available straight away.’