A CHILD’S first day at nursery is exciting for all parents.
But for Laura Kilby-Phillips and Rhys Evans, it was the start of a living nightmare.
Thirty minutes after taking their 14-month-old Megan, now two, into nursery on July 6, 2020, they got a phonecall from the manager.
Megan had suffered a seizure completely out the blue, and an ambulance was on the way.
Laura, 36, from Cardiff, told The Sun: “We jumped in the car and raced down. When we got there, Meg was totally out of it. She was dozy and sleepy.”
At the hospital, Laura recalled: “They checked her over, but the doctor put it down to separation anxiety.
“He said because it was her first day nursery, she probably got herself into a tizzy. She was probably worked up at being left behind.
“That didn’t sound like Megan.”
And Laura’s gut instinct was right, for only six months later, her little girl would be diagnosed with a brain tumour that had likely been there since birth.
Sitting just by her brain stem, the stage 1-2 glioma was inoperable, meaning it will not be able to be removed by surgery.
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Megan is a year into an 18-month chemotherapy course for her tumour, which doctors hope will “burn it out”.
But, despite everything, Meg is described as a “little warrior”, who is “bubbly and full of life”.
Laura and Rhys, who have been together for 15 years and married in May 2021, are fundraising for LATCH, a Welsh Children’s Cancer Charity, who have supported them throughout.
Rhys, 38, will be running the Cardiff Half Marathon on Sunday 27 March dressed in an Elmo costume – because Megan loves her Elmo teddy and has taken it to every hospital appointment.
The family’s only relief is that Megan doesn’t understand what’s happening.
Laura said: “Because she’s so little, she’s naive to it, which is a bit of a blessing because she’s got no fear around it.
“But then also, because she’s so young, she doesn’t know any difference. She can’t explain to us how she feels, because she doesn’t know any other way of being two [years old].”
There’s no knowing how Megan's future will pan out, as Laura said: “The oncologists said Meggie might make it through this.
“It’s frustrating, you’re desperate for hard facts to cling on to.
“But what we have learnt is nothing is given anymore. You just have to roll with what happens.”
Warning signs
After the first seizure in July 2020, the family were sent home and, for a few months, everything seemed normal.
Until, on December 14, Megan had another seizure – this time in front of her older sister, Molly, who is five.
Laura said: “It was terrifying. She was convulsing for quite a bit of time. Her eyes were rolling back."
After being rushed to hospital, Megan was given an ECG and blood tests, but no abnormalities were found. Laura was given a leaflet about epilepsy and was told a consultant would be in touch.
Laura said: “I felt like nobody was listening. It felt like something wasn’t right.
“She’s such a happy kid, so bright and full of energy.”
A few days later, while playing with her big sister, Megan started screaming in a panic.
Laura said: “Rhys picked her up and she was looking around but she couldn’t find our faces.
“She was calling ‘mummy, daddy’, but I realised she couldn’t see us.
“As quickly it came on, it passed. But I said we need to follow this up now, there is something going on here.
“We’ve got the most amazing GP, and she said ‘if you’re feeling there is something in your gut telling you there is something wrong, I trust your intuition’.
“Rhys took her in to the GP and mentioned a weird symptom – Megan had a bit of a wobble. She was only 19 months, and toddlers are really wobbly anyway.”
But it was Megan’s wobbly walk that sparked the GP to take action, sending Megan off to hospital where she would stay overnight and have a CT scan.
Laura, relieved that more tests were being carried out, said: “Rhys was sure it would be epilepsy. He said, ‘we’ll be home by 5 o’clock!’. But I was worried from the get-go.”
The signs of a brain tumour in kids and adults
The symptoms in children to watch for:
Persistent headaches, particularly on waking
Changes in vision, such as blurred or double vision
Balance problems, including a reduction in motor skills
Seizures
Nausea and vomiting
Behaviour changes
Delayed puberty or abnorma growth
Abnormal head position
In adults, all of the above and:
Tiredness
Loss of taste and smell
Nausea and dizziness
When the results came back, Laura said: “I instantly knew it was bad news.
"The consultant said we’ve found an abnormality on her left temporal lobe. He wouldn’t say what it was, but I thought ‘it’s got to be a tumour’.”
Laura and Meg were kept overnight for an MRI scan, on New Years Day.
Laura said: “That was so weird because me and Megs were in hospital overnight on New Year's Eve with all the fireworks and everything going on outside.
“You've got all these lovely Happy New Year messages coming through on Facebook, saying ‘here's to 2021, 2020 was awful’.
“I was just thinking ‘this will be the worst year yet’. That was traumatic.”
Rhys asked what can they promise? Will she reach her teens, her 20s? Will she be okay? But they won’t tell you anything.
When the results of the MRI scan came back, it confirmed that Meg had a brain tumour – however, at the time, doctors seemed positive.
But the results of a biopsy several days later meant that Laura and Rhys were told to “readjust their expectations”.
Laura said: “Because it looked to be diffusing in the brain, and it's quite close to her brainstem, surgery would never be an option. That’s when it clicked – she’s going to need chemotherapy.
“We had been told that would be the last option, and it was likely she’d just have surgery. It flipped on its head.
“They said she will need 18 months of chemotherapy to try and ‘switch the tumour off’.
“We were totally floored. I thought it might just be three to six months. It was devastating. I was struggling to get my head around it all.
“At the first meeting with the oncologist, we were desperate for reassurance. Rhys asked what can they promise? Will she reach her teens, her 20s? Will she be okay?
“But they won’t tell you anything.”
Megan started her chemotherapy in February 2021, starting with a “brutal” intensive 10-week course.
Laura said: “It was a lot of sickness. She lost so much weight and went off eating.”
Now, Megan has chemo in six week cycles – three weeks on, three weeks off – and started a new intensive treatment in January.
The family are hoping to raise awareness of the lack of research into brain tumour research.
Brain tumours kill more children and adults under the age of 40 than any other cancer. But just one per cent of the national spend on cancer research goes towards its research.
Around 500 children and young people, and 11,000 adults in the UK are diagnosed with a brain tumour each year.
Laura said: “There is no targeted treatment for Meg’s tumour, because there is so little research into brain tumours.
“She has chemotherapy that’s for neck, head, and ovarian cancer. It's a treatment you would give to an adult, not a child, it’s just brutal.
“It’s taken away her appetite and she’s hardly able to eat anything. She goes through different spells.
“For a while we figured she was obsessed with beans on toast – so we gave it to her breakfast, lunch and dinner!
“Because the chemo wipes her body, you’re quite aware she needs nutrients. But it’s such a battle.”
Megan has MRI scans every three months, and when her chemo ends in late summer, this will be reduced as she gets older.
Laura said: “They'll definitely monitor her through and past puberty, because it's quite common to see the brain tumours change again due to hormones.
“It’s hard because you think the treatment will end in August, but actually, it's never going to end. It's never going to go away.”
One positive to come out of the tragedy, is that it pushed Laura and Rhys to get married after being together for 15 years, having met at BBC Wales where they both work.
They’ll always treasure the adorable photos of their special day, including of Megan and Molly as bridesmaids.
Mel Tiley, community development manager for Brain Tumour Research, which Laura and Rhys donated their wedding gift money to, said: "We’re so sorry to hear about Meg’s shock diagnosis and wish her all the very best for her treatment, which is due to finish in August.
"Meg’s story and reminds us of the indiscriminate nature of this awful disease. We thank Laura and Rhys sincerely for choosing to support our charity; their generous wedding donations will fund vital research and help get us closer to finding a cure."
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