In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
The O’Donovan family’s lives were thrown into turmoil in 2016 when three-year old Lyla was diagnosed with a brain tumour. In the years that followed, Lyla has suffered from endless complications and the family have had to deal with a series of blows along the way. Despite the tumour being low-grade, Lyla’s future is uncertain and her parents are desperately trying to stay strong for their children.
“Telling the rest of our kids about Lyla’s tumour was one of the most difficult things I’ve had to do. Our oldest two, Reece and Olivia, asked: ‘Is Lyla going to die?’ which was just heart-breaking. What was even harder was putting on a brave face and telling them not to worry, when on the inside I was asking myself the same questions.”
Here is Lyla’s story, as told by her father, Paul…
Lyla’s illness dates back to 2013 when she was 18 months old and we were all living in Germany. She was being sick a lot of the time but doctors couldn’t get to the bottom of what was causing it. They’d suspected lots of different illnesses like cystic fibrosis and even lactose intolerance. I think part of the problem was that Lyla is such a fighter and it was difficult to tell how much she was really suffering.
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The symptoms continued for the next few years but we didn’t get any closer to a diagnosis. A turning point came in March 2016 when my job in the Armed Forces led me to move the family to Barnstaple in Devon. Back in England, Lyla’s symptoms were gradually getting worse; her eyes started to roll back when she was ill, she had dizzy spells and was losing her balance, but the doctors in Devon were even less helpful.
My wife Kirsty was dismissed as an ‘over-protective’ parent, and the final straw was when the GP told us Lyla was ‘role-playing’ and acting up to get attention. Kirsty finally had enough and, in September, she took Lyla to A&E. Again, the doctors couldn’t find any problems but just as they were about to discharge Lyla, a locum doctor referred her to Bristol Hospital for an MRI scan.
What came next was a huge blow. We were told that Lyla had a brain tumour called a pilocytic astrocytoma. Despite it being low-grade, when they found the tumour, the doctors were in awe of the fact she was even standing with a tumour that large.
Telling our other five kids about Lyla’s tumour was one of the most difficult things I’ve had to do. Our oldest two, Reece and Olivia, asked: “Is Lyla going to die?” which was just heart-breaking. What was even harder was putting on a brave face and telling them not to worry, when on the inside I was asking myself the same questions. Kirsty really struggled with the news too. She lost her mum and her brother when she was younger and now she was faced with the prospect of something happening to Lyla.
Immediately after Lyla’s diagnosis, the doctors drained some of the fluid in her brain and gave her steroids to take at home. A frustrating four weeks followed, as we waited to find out when she would have surgery. The steroids made her really ill and we were in limbo waiting to hear what would happen next. In hindsight though, we’re so grateful that consultants took the time and made sure our little girl had the best surgeon and the best treatment possible. You just have to put your faith in the doctors to do what’s best.
Lyla’s surgery date came around and Kirsty and I were scared enough already, but when we were told “Lyla won’t come out of surgery the same child”, it was even more terrifying. No parent should have to go through what we went through that night. Lyla came out of theatre fifteen sleepless hours later and was taken to intensive care to recover. Amazingly, the doctors had managed to remove 99.9% of the tumour and we were absolutely over the moon. It seemed our brave little girl had beaten it.
She was heavily sedated for the next week and was supposed to have a tracheostomy to help her breathe, but when the doctor’s removed the tube to see if she could do it on her own, she did. After that, Lyla moved to a high-dependency ward for three weeks and she slowly started to recover with the help of a physiotherapist.
It felt like we’d come out the other side; the tumour had been removed and Lyla was getting stronger and becoming herself again. However, things took a turn for the worse when Lyla was at home on weekend release and she became extremely ill. We rushed her to our nearest hospital in Barnstaple, with no idea what to expect. Our poor little girl had been through so much and just when we thought things were on the up, we were dealt another blow: Lyla had meningitis.
We were absolutely devastated but luckily the infection had been caught early with a strong dose of antibiotics. Thanks to Lyla’s strong will, she was well again within a few weeks and was discharged from hospital in November on her fourth birthday.
The months that followed were just perfect; Lyla was getting better each day, our family was back together again, and we were all looking forward to a holiday at Butlins for New Year. The whole ordeal had been so hard on the rest of the kids. Days out had been cancelled and Lyla’s brothers and sisters were making digs that Lyla gets all the attention. So, our trip to Butlins was just what everyone needed.
Sadly, we didn’t have the worry-free holiday we had planned. While we were away, Kirsty and I noticed that something wasn’t right. The fluid that had built up on Lyla’s head hadn’t gone down at all and we’d been told it would have gone by this point. It looked almost like she had a balloon under her scalp. I took her back to hospital to get checked over and at the start of January 2017 she was fitted with an emergency shunt to relieve the pressure. This seemed to do the trick and Lyla was like a brand-new kid after that, she was so happy and for the first time in months she was full of energy and raring to go.
In May 2017 I had to relocate the family from Devon to Durham as I had a new posting. We’re originally from Hartlepool and so it worked out best for us, being near our families.
Lyla started school in the September and it was so lovely for her to just be like a normal four-year-old. Teachers had told us that Lyla is really behind for her age, and although she is just in Reception and enjoying making friends and socialising, I do worry how much her development has been stunted by constantly being ill and in and out of hospital.
Unfortunately, by February 2018, Lyla’s health had gone downhill again. She started having seizures that seemed to be triggered when she was upset or distressed or even by sneezing. Into hospital we went again and an MRI scan showed that old scar tissue was fusing with a ventricle and causing a fluid blockage in her brain.
The doctors gave her epilepsy medicine to control the seizures and initially the drugs worked, but one of the side effects was that Lyla feels groggy and disorientated. It’s a vicious cycle because in her grogginess she gets upset and frustrated, which then triggers more seizures.
A new shunt was fitted to try and solve the seizures but that didn’t work. Last month, Lyla was put on an ICP monitor to measure the pressure in her head and seeing her with a tube going into her skull has been the most distressing part so far. I felt so helpless seeing her lay there unable to move.
At this point in time, Kirsty and I are at a loss what to do. Although Lyla’s tumour has been removed, the complications have just been endless.
Currently, Lyla is still having seizures and we’re just in a wait-and-watch situation. The doctors don’t want to operate right now, but they’ve said the problem could get worse as she grows. It’s been a cruel few years watching Lyla go through all of this, but it’s not about my and Kirsty’s pain – we just have to think of Lyla and the rest of the kids. Lyla has been the bravest out of all of us, she just keeps knocking doors down and defying everything that gets thrown at her. Although, sometimes I can’t help but think ‘how lucky can one little girl be?’
It feels like we’ve been on a rollercoaster ride – every time things seem to be on the up, more bad news is waiting around the corner. Lyla has stayed so strong throughout but there have been times when she’s said, “Dad, I wish I didn’t have a brain tumour – why can’t I be like other kids?”
At the moment, we don’t know what the future holds. I just hope that the doctors can operate and cure her once and for all. This whole experience has opened my eyes to how devastating brain tumours are. We had no idea how many other families were going through this battle and that’s why it’s so important to raise awareness. The more people know about the disease, the more funding can be allocated for research into a cure. No child should have to suffer like Lyla has and continues to.
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