We can’t save Lola, but we just want to be able to help in some way, in her memory
- Naomi, Lola’s Mum
Lola was a happy baby who fitted right in as the third of three kids. But before she reached her first birthday, things started to go horribly wrong.
Pre-diagnosis
Chubby cheeks, big blue eyes and a beautiful smile − that’s how Lola’s mum Naomi remembers her little girl. The youngest of three children, Lola was an easygoing 10-month-old who was doted on by older brother, 8-year-old Toby, and older sister, 4-year-old Maya.
“We wanted three kids, and everything was going just the way we planned,” says Lola’s dad, Aaron. “I almost feel naïve now, looking back. Of course the wheels were going to fall off at some point, you know?”
Symptoms
Lola had just started daycare and had been sick on and off for a little while, with intermittent nausea and slight temperatures. “We took her to the GP, who said it was probably just a tummy bug, and we just sort of dismissed it,” says Aaron.
One Friday afternoon, Lola was quite lethargic and then started vomiting. Naomi and Aaron took her to the hospital where some tests were run. The following morning, still at the hospital, Naomi noticed that Lola would not use her left hand to take food, despite having a cannula in her right arm.
“I told the doctor Lola had been a bit funny about using her left-hand side. And she asked me ‘has she always had this asymmetrical smile?’ Then we started going through old photos and realised that it had been a month or so that Lola’s smile had been a little bit crooked.”
The neurosurgeon told us ‘There’s a tumour in there. It’s big and it’s deep. Those words will never escape us
- Aaron, Lola's Dad
On Saturday night, still at the hospital, Lola was taken for a CT scan. Watching the radiographer look at the images then pick up the phone, Naomi had a feeling that something was seriously wrong.
“A while later, three doctors walked in with a grim look on their faces,” recalls Aaron. “The neurosurgeon told us ‘There’s a tumour in there. It’s big and it’s deep. Those words will never escape us.’”
Lola went into emergency surgery the next morning. Aaron says handing Lola over to the anaesthetist was confronting. “We had to pass her over, not knowing what state she was going to come back in.”
A wait of several hours followed. Finally, the neurosurgeon appeared, telling Naomi and Aaron that the tumour was the size of a mandarin, and that he had removed all of it, as much as he could see.
Diagnosis
A few days later, Lola’s pathology results came in confirming her diagnosis. She had a rare brain cancer known as ETMR (embryonal tumour with multilayer rosettes) – an aggressive cancer with a very high chance of regrowth.
“There is no tailored treatment for ETMR – they just use high dose chemotherapy,” explains Aaron. “They said the chemo was going to be really nasty, but without it, there was zero chance of survival.”
I will be forever grateful we got to spend Lola’s first birthday at home
- Naomi, Lola's Mum
At this point, COVID lockdowns began. This created another level of complication, with only one parent allowed to visit at a time, except for a 15-minute changeover each day. Naomi spent most of the time with Lola. “I was her comfort, and she was mine,” she says. “We would spend many long days and nights in the hospital room alone, away from Aaron and the other kids.
“I remember needing to keep a permission note from the doctors in the car in case we got pulled over on the way to hospital during lockdowns. I will be forever grateful we got to spend Lola’s first birthday at home… albeit in lockdown, but the most important thing was that we were together as a family.”
Treatment
Lola began six rounds of chemotherapy, each of which followed a 28-day cycle. After the fourth round, a follow-up MRI revealed residual cancer in her brain. She underwent a second operation and chemotherapy resumed, along with intensive physiotherapy and occupational therapy to address the lack of mobility on the left side of her body.
“That’s when I started thinking about some of the long-term impacts of treatment,” says Aaron. “We were doing the kidney test, the hearing test, and I realised that was because if Lola survived, all of those things were going to be impacted for the rest of her life.”
She was trying to put her dummy in and kept getting clumps of hair in her mouth. My heart just broke for her
- Naomi, Lola’s Mum
In the meantime, there were more immediate side-effects to deal with, constant vomiting, and round-the-clock temperature checks because of the risk of infection.
Naomi remembers Lola waking up distressed and coughing one night at home and going in to find Lola’s hair everywhere in the bed. “She was trying to put her dummy in and kept getting clumps of hair in her mouth. My heart just broke for her.”
When chemotherapy finished, the doctors raised the possibility of radiation therapy and Naomi and Aaron agreed. Five days a week for five solid weeks, Lola would come in early morning for a general anaesthetic and radiotherapy, having fasted the night before.
Home Time
On Christmas Eve, Lola had her final treatment and left the hospital, with a follow-up MRI scan booked in for February. Over Christmas and New Year, the family spent special together time, and Lola was the best she’d been in a long time.
After taking Lola for her MRI on the morning of 2 February, Naomi and Aaron went home and waited for the results. That afternoon, the oncologist phoned them, telling them that, although the official report was not yet in from the radiologist, he didn’t like what he was seeing.
“That was really gut-wrenching,” says Aaron. “That’s when we knew. We knew in our heart of hearts that was it.”
Palliative Care
Lola’s condition deteriorated quickly after having a seizure a month after the MRI, and she went into palliative care. Naomi and Aaron managed to take the whole family for a special weekend away up the coast. A friend also organised a videographer to take photos and make a video of the family at home, which Naomi says was really lovely and something they will treasure forever
With Lola not able to feed, she was re-admitted to hospital. But Naomi and Aaron were determined to get Lola home for the last days of her life, and thankfully, they were able to make that happen. On 26 March, Lola passed away peacefully at home.
In memory of Lola
Since Lola passed, Naomi and Aaron have tried their best to keep her memory alive in their children’s minds. “We try and keep Lola very much a part of the family,” says Naomi. “And much as it pains me, it does warm my heart when they talk about her.”
For Naomi and Aaron, losing Lola is not only about their own grief and that of their other children – they grieve for Lola as well. “She went through so much in her little life and I just feel so guilty that we weren’t able to do more for her. It really breaks my heart, that we weren’t able to help her,” says Aaron.
Recently, Naomi and Aaron attended a talk at Children’s Cancer Institute, where they were inspired to hear about the progress being made in childhood cancer research.
“We want to cure cancer. We want to be a part of that,” Naomi says. “We can’t save Lola, but we just want to be able to help in some way, in her memory.”
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