In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Toddler Megan Evans’ brain tumour diagnosis came after she suffered two seizures, the first of which happened on her first day at nursery, just half an hour after her parents had dropped her off. Megan’s tumour, a low-grade glioma, was picked up by a scan on 30 December 2020. A month later, her parents were told that the tumour was inoperable and just a few weeks later, little Megan began an 18-month course of chemotherapy. Now more than halfway into the gruelling treatment regime, the family is trying to stay positive and focus on the finish line, while remaining hopeful that Megan’s scans will continue to be stable.
Meg’s mum Laura Kilby-Philips tells her daughter’s story …
Megan was born in April 2019 and made our family complete. She was a much-wanted little sister for our daughter Mollie, who is now five. Meg was a wonderful baby; very happy and also very advanced. She was bright and hitting all of her milestones. We had no concerns about her whatsoever.
Meg was 15 months old when she started day nursery in July 2020. Her first day came as restrictions were beginning to ease following Wales’s first COVID-19 lockdown. The pandemic had been hard for us at times but overall, the girls’ dad Rhys and I had enjoyed spending lots of time at home and in the garden, together as a family. On the morning of 6 July, we dropped Meg off at day care and were pleased she was happy to go in. However, just 30 minutes later, I got a phone call from the nursery manager to say Meg had had a seizure. It was such a shock. We rushed over to find that although the seizure had thankfully stopped, Meg was completely wiped out from it.
“An ambulance was called and Meg and I were taken to the University of Wales Hospital. Rhys couldn’t come with us, due to the coronavirus restrictions.”
When we got there, Meg was checked over by a doctor. He said the seizure may have been caused by her distress at being left in childcare for the first time. I could see why he may have come to that conclusion, but I also had a feeling that there was something more serious going on. Meg was really happy to go into nursery and it was a familiar place, our oldest daughter Mollie having attended the same setting. Later, the nursery watched their CCTV footage and could see no signs that Meg had been upset before the seizure. We also spoke to her key worker, who confirmed she’d be fine as well. Others suggested the seizure might have been a febrile convulsion but again, I suspected that wasn’t the case. Meg hadn’t spiked a temperature or had any other symptoms.
I am a worrier. My head will always go to the worst-case scenario. But after that day in July, Meg seemed to recover well, so we hoped it had just been a one-off. She went back to being the happy and playful little girl we knew and loved. Fast-forward to 14 December 2020 however, and she had another seizure, this time at home.
“It was early one morning and I was taking Meg upstairs to get dressed, when she started convulsing in my arms. It was absolutely terrifying.”
It was also difficult trying to shield Mollie from what was going on. It was very dramatic but we had to stay calm to protect her. We called an ambulance and by the time the paramedics arrived, Meg’s seizure had finished but like the first time it happened, she was very dozy. The medic reassured us that she looked fine but gave us the option of taking her into hospital for more checks. Keen to have her assessed in A&E, we went to hospital, where they carried out various tests, including an ECG. All her test results came back fine and we were discharged. We were sent away with an information sheet about epilepsy and told we would hear from an epilepsy consultant. That diagnosis made sense to Rhys but I still had a niggling feeling that it was something else.
Christmas came and went without any more seizures or causes for concern but then, on the morning of 29 December, we woke up to find the girls playing at the end of our bed when suddenly Meg started crying and was really distressed. Rhys picked her up to try and calm her down and we realised that even though she was looking in his direction, we could tell she couldn’t see him. She wasn’t focusing on his face. After a couple of minutes, she came around but it was enough to have triggered some worry in us. We had breakfast, went out together as a family, then in the afternoon we tried chasing the epilepsy department, as we still hadn’t heard from them. Because it was the week between Christmas and New Year, it was difficult to get hold of anyone. We have an amazing GP and luckily, we managed to speak to her, and she encouraged us to bring Meg into the surgery if we were worried. We took Meg in and when the doctor did her checks, she noticed that Meg seemed a bit ‘wobbly’ on her feet. The GP called the hospital and Rhys took her in.
When Rhys arrived at the hospital at around 5pm, he was told there was no paediatric consultant on the ward. They said if they wanted to see someone, they’d need to stay in overnight. They found a bed for Meg and a pull-out bed for Rhys and they slept over. The next morning, some doctors came to do physical and neurological tests and then Meg was taken for a CT scan. An hour or so later, the doctor came to see Rhys and said he needed to call me to come in for a chat.
“Rhys said it was fine to go ahead and give him the results on his own, but they insisted that we were both there.”
Rhys called me and I rushed in. When I arrived, they told us they’d found an ‘abnormality’, possible scarring, in Meg’s left temporal lobe. I immediately suspected it was a brain tumour but they were not the words they used. The worst thing was that Rhys had to leave straight away, as the COVID restrictions meant that only one of us was allowed to stay with Meg.
The next step was a more detailed MRI scan, but that got postponed a couple of times before it finally went ahead on New Year’s Day. We received the results from the MRI scan quickly and when the consultant paediatric neurologist delivered the results, she said it looked like a slow-growing brain tumour. She sounded very positive. She said it may have been there since birth and that it was in the ‘best possible place’ for surgery. She also said that Meg would be able to go home that afternoon.
A few days later, however, Meg’s case was discussed at a multi-disciplinary team (MDT) meeting and after that, the doctors’ tone seemed to change. We were told that our ‘expectations need to be re-adjusted’. A few more people had looked at the scan images and things didn’t seem to be as straight-forward as we’d first been led to believe. A biopsy was arranged for 7 January but we were told that surgery to remove the tumour wouldn’t be possible, due to its diffuse nature. Samples of the tumour were sent to Great Ormond Street Hospital in London and, thankfully, their pathology report agreed with the pathologist in Wales, who’d graded it as 1 to 2 (low grade).
“The treatment plan was an 18-month course of chemotherapy, beginning in February 2021. When they said 18 months, we were gobsmacked.”
It felt like such a long road ahead of us. Meg began her treatment with a 10-week intensive course of chemo, during which her hair fell out, and she became quite poorly and lost a lot of weight. It was a really tough time. I knew the vomiting was going to come but it was so hard when it did. It’s just awful seeing your little one like that. The second course of chemotherapy involved four-week cycles and the last course, which she is on now, is a six-week week cycle – three weeks on, three weeks off, until end of August 2022.
Aside from the fatigue and loss of appetite, generally, Meg has coped really well and has been an inspiration to all of us throughout. We have had a couple of bumps in the road. At the end of August last year, she spiked a temperature, which turned out to be COVID-19, and had to be admitted into hospital for a while but still managed to receive chemo while she was infected with the virus. She has the chemo administered through a central line, so they have to be careful that it doesn’t get infected. In November, she had an allergic reaction to the chemo drug carboplatin; her face swelled up and she struggled to breathe. They administered an adrenaline shot in her thigh and they altered her chemo accordingly. She’s never down for long, though.
“After about two days of being ill with COVID, she was bouncing around again. They call her a ‘bottle of pop’ in the hospital.”
Meg has an MRI scan every three months and so far, all the results have come back as ‘stable’. Her oncologist says the chemo won’t necessarily shrink the tumour but it should stop it from growing. As each scan approaches, the anxiety builds and we find ourselves just trying to take each day as it comes, going from appointment to appointment and always hoping for the best.
A real positive to have come out of all of this is that in May last year, Rhys and I got married. We’ve been together for 15 years, having met at BBC Wales in Cardiff, where we both still work to this day. We decided that tying the knot would really cement our family together, so we arranged the wedding very quickly and invited our closest family members and a couple of friends to celebrate with us. The ceremony, on 1 May, took place at the grade II* listed Victorian Gothic mansion Insole Court, in Llandaff. It’s where we took our daily walks during lockdown and it was really lovely. The girls loved it; they were bridesmaids and had the best time. Instead of asking our guests for gifts, we kindly asked them to make a charitable donation in honour of Meg. We decided to split the wedding fund between Latch Welsh Children's Cancer Charity and Brain Tumour Research.
Before Meg’s diagnosis, I’d never known anyone with a brain tumour and since reading up on the disease, I’m completely shocked and horrified by the statistics. I read the In Hope stories on the Brain Tumour Research website and what shocks me is how little personalisation there seems to be when it comes to treatment. More funding is desperately needed to go into research to find better, more specialised options for patients. The treatment Meg is on is absolutely brutal. We’ve come across three other children with brain tumours on the ward where she’s being treated. One of my close friends has just lost her cousin to a glioblastoma multiforme (GBM). They are clearly not as rare as people seem to think.
The past year or so has been a massive juggle and our family has had to adjust to this new way of life. I’ve dropped down to part-time hours at work and I’m doing a slightly different, less stressful role, as I was having panic attacks. Luckily, our employers have been supportive. You just have to try and keep going and keep things as normal as possible. You can’t let it take over. We’ve still got a few months to go until Meg’s chemo is finished. We’re focusing on the end, hoping for more good results from her scans and beginning to think about maybe booking a nice holiday at the end of Meg’s treatment.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure