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, as the six-year-old now faces a tenth brain operation.
“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, a Corporal with the 5th Battalion the Rifles (5 Rifles) …
Lyla’s illness dates back to 2013 when she was 18 months old and we were all living in Germany, where I was based. 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.
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 army 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. Before she was wheeled into theatre, I told her that I loved her and that she was just going for a little sleep and that we would see her soon. Yet I was convinced she wouldn’t make it.
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 doctors 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 was getting 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 Bearpark Primary School in the September and it was so lovely for her to just be like a normal four-year-old. Teachers told us that Lyla was really behind for her age. 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 intracranial pressure (ICP) monitoring to measure the pressure in her head. Seeing her with a tube going into her skull was deeply distressing part.
“I felt so desperately sad seeing her lying there unable to move. She was only five at the time and was so scared and upset. As parents, we felt so helpless.”
Lyla’s seizures continued and we were left in a wait-and-watch situation. The doctors didn’t want to operate again and so they decided to measure the pressure by putting an implant in her brain, which had to be drilled in through her skull. She came home with the implant in and we were given a computer, which she was hooked up to three or four times a day. It was better because she could move around but she never lasted long with it on. Sometimes the pressure readings were really high. They removed the device in November 2018 and told us to “go and make memories”.
Kirsty and I were determined to do just that and so at the beginning of 2019 I set out with a bucket list of three special things to do for Lyla this year, before she has to undergo any further risky surgery. In February, we made the first wish on the list come true by renewing our wedding vows with Lyla and her five siblings at the heart of the celebration. Lyla has always wanted to be a bridesmaid and so this was an opportunity to make that dream come true. Lyla wore a pretty flower girl dress and sparkly tiara and read out her own moving speech during the ceremony. It was lovely.
In March, Lyla's inspirational story and attitude secured her a place on the Pride of Britain Awards shortlist – that was my aim number two, to get her a national recognition for her bravery. Unfortunately, she didn’t make it through to the finals but she has been recognised for the compassion and support she has shown other youngsters going through hard times by the charity WellChild. In recent months Lyla has been on a mission to bring joy to other children battling illnesses. With my help, she and her older sister Lilley set up a Facebook page, where the girls send certificates of bravery to seriously ill children all over the world. We were thrilled that they chose her as winner of their Inspirational Child award in her age category. She’s hoping to meet the Duke and Duchess of Sussex later this month, to receive her accolade at a special ceremony in London. I’m so proud of her and the way in which she has picked herself up and is helping others. She is so deserving of this recognition.
Our third and final wish is a once-in-a-lifetime dream holiday to Disneyland Florida for all eight of us – and that has now been booked for February 2020, provided Lyla is well enough to travel. The doctors have been putting off fixing the blockage in Lyla’s brain as it will be an extremely risky operation. However, earlier this month Lyla’s consultant decided another operation is the best course of action and she is due to go in for surgery again in December. This one will hopefully prevent them from dissecting some of the scar tissue around the brain stem. They will insert a tube in the top of her brain down to the back ventricles, piercing a hole to allow the fluid to drain and hopefully help stop her seizures once and for all.
“The team at the Royal Victoria Infirmary (RVI) in Newcastle are waiting for specialist equipment to arrive before they do the surgery. Our spirits remain high and nothing is going to stop us from enjoying life.”
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. 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?”
We don’t know what the future holds. I am due posting in April next year but the thought of moving away from Lyla during her time of need is too much to bear. The army have been really supportive of our situation so far and I hope they will continue to be. 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.
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Lyla's story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.