A mum was told her daughter’s runny nose was a viral infection before she received a devastating diagnosis.
Layla Gillespie began having seizures when she was just one year old. Her parents, Darren and Ashley Hamilton were forced to rush back and forth from A&E. Initially, the couple from Larkhall, south Lanarkshire, were told that Layla’s pale complexion and runny nose were down to a viral infection - and then later reflux.
But after contacting the NHS 26 times in the space of six months and demanding an appointment at the nearest children’s hospital, an MRI found something heartbreaking. Doctors discovered a tumour the size of an orange on Layla’s brain that had wrapped itself around her central nervous system.
The family were told on November 8, 2021, that Layla was battling stage three Ependymoma, which is a growth of cells that forms in the brain or spinal cord. Ashley told Glasgow Live: "I was expecting something to do with epilepsy but they told us that she needed to stay in hospital. She needed immediate surgery. She had a full 10-hour posterior fossa craniotomy.
Layla and her beloved family"We were then given the news that no parent wants to hear. They told us the risks of our child not making it and the potential side effects. We were told that she may not be able to breathe normally, she may be paralysed and might not remember anything else.
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"When we walked into ICU we didn't know what to expect but she got on her hands and knees and said 'mummy I need my dummy. She kept getting better and better. Layla was out of hospital in two weeks and we thought it was all over. At the time they didn't think it was cancerous but the day we were heading home we got the pathology results back, saying it was stage three Ependymoma."
It is thought only around 30 people are diagnosed with the rare cancer in the UK each year, so treating it can be difficult. Due to Layla’s age, doctor’s told the heartbroken parents that proton radiotherapy was the only option.
Unfortunately, this treatment isn't available in Scotland and the family were forced to travel to Manchester - where a spot luckily opened in January 2022. The 35-year-old mum said: "We went to Manchester for seven weeks. She had 33 rounds of proton radiotherapy and rang her bell on February 18. We thought it was all over. She was being scanned every three months and they were all completely clear."
The youngster has always taken her treatment with a smile
Two years after her first diagnosis, she was told her cancer had returnedThe couple thought their family's lives could go back to normal after what was a truly traumatic ordeal. Sadly, exactly two years after Layla's initial diagnosis, on November 8 2023 they were dealt another horrendous blow. Ashley explained: "We found it was back and it was in her spine. Her brain and neck are fine but the tumours have been found at the base of her spine near her tailbone."
"The cells are being carried in her spinal fluid. Originally they were 50/50 on whether it was a relapse or something else. We did loads of different tests but they came back as negative for cancer which we couldn't understand. She had a spinal surgery to cut away part of the largest tumour for testing.
"Even that came back saying it wasn't cancerous. Just before Christmas, we were back in hospital to get her central line put in her chest again. They started to think that it may have been scar tissue that had fallen from her brain. We returned six weeks later for a scan hoping everything would be ok. The scan showed that the tumours that were there had grown and a new one appeared."
The mother-of-three found hearing the news that your now four-year-old daughter is battling cancer for the second time is harder than being told the news for the first time. She explained: "Everybody thinks you somehow get used to hearing that your child might die. It was worse the second time. The first time it happened so fast."
"One minute we were living our normal lives then the next minute we were in hospital getting surgery. We didn't have an option. This time we were back to normal and thinking that the horrible nightmare was behind us."
"We'd had so many scans where everything was fine. To be told they found something was devastating. We knew what we were in for. It all happened a lot slower than previously. "You think it's cruel to happen to your child once but it is beyond cruel for it to happen a second time."
Specialists agreed that the best way to treat Layla was a cranial and spinal radiotherapy. Given her age, Layla doesn’t fully get that she’s unwell, and thinks it’s normal to be in and out of hospital so much.
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As well as coping with having their daughter constantly in and out of hospital. The Larkhall couple had to tell their other children Kelsi Hamilton, 11 and Darren Gillespie Jnr, 12, that their sister's cancer had returned The family are now fundraising to fulfil Layla’s wish of going to Disneyland and were blown away by people’s generosity.
Visit Lalya's fundraiser here.
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