Naomi and Aaron Ross endured a loss no parent should ever have to go through after their happy and seemingly healthy daughter died just shy of her first birthday.
Little Lola’s life was cut short on March 26 at just 10 months old from a terminal brain cancer.
The only sign something was wrong at first was her slightly ‘crooked’ smile.
The ‘perfect’ little girl with ‘chubby cheeks, big blue eyes and a gorgeous smile’ was thriving and hitting all of her milestones until things took a devastating turn.
She had just started going to daycare when she began experiencing mild vomiting and fluctuating body temperatures – but her doctor put the symptoms down to a tummy bug.
However, her Sydney parents knew something was seriously wrong when their baby girl’s condition suddenly deteriorated.
She lost her fight just months after being diagnosed with an aggressive form of cancer. Doctors found a tumour the size of a mandarin on her brain.
‘It didn’t feel real that she was gone,’ Naomi, 38, told Daily Mail Australia.
‘The hardest thing is living every single day without Lola here with us. Trying to fathom why Lola? It’s not fair that her life got cut short.’
Lola was the youngest of three kids – and she was ‘adored’ by her older brother Toby, now 11, and her sister Maya, now seven.
When the mum returned to work as an executive assistant, Lola was getting sick ‘on and off’ with some high temperatures over a couple of weeks.
‘We visited the GP and it was presumed that she had a bug given she just started daycare,’ Aaron, a 42-year-old firefighter, said.
During that time, the couple noticed Lola’s smile looked slightly different but they weren’t too concerned. It was barely noticeable, even in photos.
Then Lola got progressively worse. It was when she became uncharacteristically lethargic on a Friday afternoon that her parents decided to take her to the Emergency Department.
‘She became sicker and a little dazed and unresponsive, which made us feel a little uneasy. Something didn’t feel right. Her condition had seemed to worsen since our visit to the GP and Naomi was worried,’ the doting dad said.
At the hospital, doctors ran multiple tests including blood and urine samples.
‘It wasn’t immediately clear what was wrong with her but the doctors wanted to keep Lola at the hospital for observation,’ Aaron explained.
Naomi and Aaron Ross with their kids – Toby, 11, Maya, now seven and 10-month-old Lola
The next day, Naomi noticed Lola was not using her left hand despite her right arm being bandaged.
The doctor noticed something unusual about Lola’s ‘asymmetrical’ smile.
‘The doctor asked if she had always had this asymmetrical smile. 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,’ Aaron said.
The couple were told the slanted smile was the key sign that a deadly tumour was growing on Lola’s brain – after scans found ‘some left side weakness’.
‘A CT scan was arranged late on Saturday night and although they didn’t say anything, Naomi could tell by the look on the radiographer’s face that something wasn’t right,’ Aaron recalled.
‘Haunting words’
When the parents returned to the room with Lola, four doctors walked in.
‘We immediately knew something was wrong,’ Naomi said.
‘They told us the neurosurgeon had “found something and it’s big and deep”. These words will haunt me forever.
‘We walked the empty hallways of the hospital making our way to a ward just after midnight completely scared and shocked.’
Toby and Maya celebrating Lola’s first and final Christmas – just months before she died
Lola was diagnosed with an aggressive form of cancer – after doctors found a tumour the size of a mandarin on her brain
By Sunday, Lola had the tumour removed during an emergency eight-hour surgery.
‘We met with the surgeon who told us he had removed the tumour successfully,’ the mum said.
A few days later, pathology results confirmed her diagnosis. Lola had embryonal tumour with multilayer rosettes (ETMR) – an aggressive cancer with a very high chance of regrowth.
‘I remember feeling numb, speechless and scared when they first told us. How could this be happening to our little baby?’ Naomi said.
‘We didn’t know what to expect or how we were going to do it. We knew nothing about childhood cancer, except that it was really bad, but had no idea what we were in for.
‘We were told the prognosis wasn’t great (below 30 per cent) but while we had Lola, we still had hope.’
‘Blissfully unaware’
The six rounds of chemotherapy was going to be intense for Lola – but without it, there was a zero chance of survival.
‘Lola was generally happy and blissfully unaware of what she was going through which on some days brought me comfort,’ Naomi said.
‘But being a baby, she couldn’t talk or tell us how she was feeling so all we could do was be strong for her and comfort her when she needed us, hoping we were doing the right thing.’
After the fourth round of chemo, a follow-up MRI revealed residual cancer in her brain. Lola underwent a second operation and chemotherapy resumed.
The family-of-five spending quality time with Lola who was always a ‘happy’ baby
The couple said they felt ‘sad’ and ‘heartbroken watching helplessly as their baby’s tiny body changed due to the treatments
‘It was really hard holding our baby as she was poked and prodded by strangers, who were trying to help her but she didn’t understand that, I tried to keep her calm and distract her,’ Naomi said.
‘It was heartbreaking feeling her body go completely limp with general anaesthetic – more times than I can count.’
‘Broke my heart’
The couple were devastated. They watched helplessly as their baby’s tiny body changed as treatments ramped up.
‘She put on weight from the steroids, lost her hair and then she lost weight because of the chemo and excessive vomiting,’ the mum said.
‘One of the chemotherapy drugs was so toxic we couldn’t hold her and had to bath her and change her clothes whilst wearing gloves every few hours.
‘She had multiple nasogastric tubes put in – it broke my heart having to hold her down crying knowing she was in pain and uncomfortable but she needed it for food and meds. I wanted to take all the pain away but we couldn’t.’
Lola was living a seemingly normal life until things took a devastating turn
Lola was able to leave the hospital after having her final treatment on Christmas Eve.
Over the festive season, the family were able to spend quality time together. Lola was the ‘best she’d been in a long time’.
After taking Lola for her MRI in early February, the couple received a ‘gut-wrenching’ phone call from the oncologist confirming the bad news.
The little girl went into palliative care as her health declined rapidly after having a seizure just weeks later.
‘I think I was in denial at first hoping we had more time. I was scared. I couldn’t fathom how we were going to do this and how we would get through it. How do we tell the other kids?’ Naomi explained.
With Lola not able to feed, she was re-admitted to hospital.
‘We went away with family the weekend before trying to make some memories but Lola was getting quite sick. We ended up in the hospital when we got back and realised what was happening,’ Naomi said.
Final days
Naomi and Aaron were determined to get their daughter home for the final days of her life, and thankfully, the doctors were able to make that happen.
The six rounds of chemotherapy was going to be intense for baby Lola – but without it, there was a zero chance of survival
‘We had a home nurse visit us daily to support her. We spent the last few days at home together. The days were slow and quiet, doing some of Lola’s favourite things,’ the mum said.
‘We played games with her and sang songs, played guitar, making her smile and laugh. We took photos and videos to capture these last moments together.
‘In a strange way it felt somewhat normal.’
The couple decided to move Toby’s birthday forward so they could celebrate with close family – but things ‘took a turn for the worse pretty quickly’.
Gone in a matter of hours
‘Lola’s breathing was slowing considerably and the nurse told us it was a matter of hours,’ Naomi said.
‘We asked our family to leave so we could curl up into our bed all together as a family and hold her. We cuddled and kissed her, we sang her favourite songs, we talked to her and told her how much we loved her.
‘We wanted to soak up as much of her as I could while she was here. It was peaceful and that’s what we wanted and what we needed it to be.’
Lola died at home, surrounded by her loving family, on March 26.
‘We felt broken, empty, angry and lost,’ Naomi said.
‘The hardest thing we will ever do was pass her body over to the funeral home that night in the dark and pouring rain.
‘Those early days were such a blur, it felt impossible to survive without her but we had two other kids that also needed us.’
Lola’s condition deteriorated quickly after having a seizure, and she went into palliative care
Since Lola’s death, the couple – who welcomed a fourth child – baby girl Edie, now aged one, have tried their best to keep their late daughter’s memory alive.
‘We try and keep Lola very much a part of the family… And much as it pains me, it does warm my heart when they talk about her,’ Naomi said.
‘For me, it gives me a space to keep Lola’s memory alive and spread “joy” in her honour and in a way it brings some healing. It also allows people to feel comfortable talking about Lola and childhood cancer and that’s ok – we want to talk about her.
‘It is so special to see the reach Lola is having and the impact she is having on this world, even though she is not here with us anymore.’
‘Trust your instincts’
The couple is now urging parents to look out for the warning signs, no matter how minor they may be.
‘I think you just need to trust your instincts. If something has changed or doesn’t look or feel right get it checked out,’ Naomi said.
‘The inconsistency and continual vomiting periods was confusing and weakness in Lola’s smile and arms were alarming.
‘Don’t be afraid to push and question the doctors, advocate for your child, you know them best.’
Lola was the ‘perfect’ baby with ‘chubby cheeks, big blue eyes and a gorgeous smile’
Although they couldn’t save Lola, the couple hope their daughter’s story will raise awareness about childhood cancer.
‘No one, no family ever thinks this will happen to them, until it does. And we don’t want anyone to ever have to go through this or endure this much heartache and pain,’ Naomi explained.
‘Unfortunately we can’t change what happened and sadly it wouldn’t have changed Lola’s prognosis but we want to educate people about what to look for and we want to help in some way.’
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 and to do that we need to raise awareness and funds for medical research,’ she said.
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