Little Lola Ross had a smile that could brighten up any room. Her sweet, slightly crooked smile was one of her distinguishing features but it was also the first subtle sign of a very rare and aggressive brain tumour.
Healthy and Happy Baby
Lola was happy, healthy smiley and bubbly and loved being around her siblings – Toby, 11, and Maya, 7. She was hitting all her milestones and the family were lapping up the first year with little Lola. Lola was 10 months old when her parents, Naomi and Aaron, noticed their baby girl wasn’t herself. She was vomiting with high fevers.
At first, they assumed it was just a daycare bug but when the baby didn’t seem to be getting better and Naomi noticed Lola seemed a bit “blank”, they took Lola to the hospital.
‘Didn’t Put in Down to Anything Sinister’
While being looked at by doctors, one of the doctors questioned Naomi about Lola’s crooked smile. It was something Naomi and Aaron had always noticed in their daughter but didn’t think it could be anything dangerous. She shared:
“We kind of made little jokes about it and laughed, but we didn’t put it down to being anything sinister. “We never imagined anything like this could ever happen to us.”
While in hospital Naomi also noticed that Lola wasn’t using her left arm as much. Instead, she was favouring the right arm which they thought was a bit strange.
Doctors paired the crooked smile with Lola not using her left arm and ran various tests.
Lola’s CT scan showed a dark mass on Lola’s brain. The next day she underwent an 8-hour surgery to remove the mass and determine the next steps.
“We just had a feeling that something wasn’t right when the doctors and nurses were talking behind a window and were taking a while to come out. By this point it was quite late at night and then a whole team of doctors entered the room. We knew then it wasn’t good.
Then they simply told us ‘we found something’. Our hearts sank,”Aaron said.
Brain Tumour the Size of a Mandarin
Sadly, a biopsy confirmed that the mass was a brain tumour the size of a mandarin. Lola was diagnosed with an embryonal tumour with multilayered rosettes (ETMR), a very rare and aggressive brain cancer that has a very high chance of regrowth with no targeted treatment protocol.
Just before her first birthday, Lola began chemotherapy treatment. The brave little girl underwent three rounds of high-dose chemotherapy while her family focused on making the days as comfortable and happy as possible for their little girl.
Sadly a follow-up scan revealed that the chemotherapy was not successful and she would need a second operation, more chemotherapy and more radiation.
On Christmas Eve, Lola received her final treatment of radiation and returned home to celebrate what would be her last Christmas with her family.
“We didn’t know what was going to happen. We just tried to keep it as light and loving as we could … but it was really hard seeing her get so sick.”
Lola’s Final Weeks
The New Year brought more heartbreak as test results confirmed that the brain tumour was terminal. There was nothing more they could do. There were no more options, no treatments left to try and no way of knowing how long Lola had left. Doctors thought it might be six months but Lola passed six weeks after that final devastating diagnosis.
“We didn’t wake up knowing it was the last day,” Naomi said. “But she deteriorated quickly. She wasn’t really responding and her breathing was laboured. Our nurse agreed it was only a matter of hours.
“All of us sat on our bed together and cuddled. We sang some songs and talked to her. She was surrounded by love.”
She passed away peacefully at home, surrounded by her family on March 26 2022. She was 20 months old.
Raising Awareness for Brain Cancer
Childhood cancer can come on with little to no warnings at all.
“We’re just ordinary people living our lives,” Naomi said. “You hear about bad things happening in the world, you just don’t expect it will happen to you. It really changes the path of your life. It changes you to the core.”
There is no greater loss than that of a child and our hearts break for Naomi, Aaron and every other parent who has had to go through this or something similar.
Naomi and Aaron are sharing Lola’s brave battle to keep her memory alive and raise awareness of childhood cancer, especially ETMR.
“While we couldn’t save Lola, we hope to still make a difference by raising awareness and donations. We hope one day cancer is something no families will ever have to go through.”
Lola’s family are sharing their story in support of Children Cancer Institute’s Christmas appeal. You can donate here.
