Lyla's story

Diagnosed in 2016 with pilocytic astrocytoma 

Lyla started to become ill in 2013, at that time the whole family were living in Germany where Paul, Lyla’s dad, was serving as a Corporal in the army. She suffered a lot of sickness and doctors couldn’t determine what was causing the varied and persistent symptoms which continued over the course of three years. Paul recalls “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.”

In March 2016 Paul’s posting moved back to England. Lyla’s symptoms were gradually getting worse with her eyes rolling, dizziness and loss of balance, however the local doctors in Devon proved to be no more helpful, even dismissive, implying that Lyla was in fact attention seeking. As a final resort, in September, Lyla’s mum Kirsty took her into A&E. Doctors again came up with no diagnosis but a locum doctor referred her to have an MRI scan at Bristol.

Paul remembers receiving the news of the scan results. “What came next was a huge blow. We were told that Lyla had a brain tumour called a pilocytic astrocytoma.” Despite it being a low-grade tumour it was so large that the doctors were astounded that Lyla was even standing.

Immediately after diagnosis Lyla needed fluid drained from her brain, was put on steroids and had to wait for a date for surgery, a particularly terrifying prospect as Paul and Kirsty were told “Lyla won’t come out of surgery the same child.”

They also had to face explaining this to their other children, and Paul says that’s one of the most difficult things he’s had to do. “Our oldest two 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.” And for Kirsty this thought was especially hard having already lost both her mother and her brother when she was younger, and she now faced the prospect of losing Lyla.

On the day of surgery it was a very long fifteen hours whilst Lyla was in theatre, but the operation did successfully remove “99.9%” of the tumour. Intensive care and then three weeks in a high dependency ward followed, and with the help of physiotherapy Lyla seemed to be getting back to her old self. The family were overjoyed, “It seemed our brave little girl had beaten it.”

But this was actually just the start of a series of highs and lows for Lyla, and a rollercoaster of experience and emotion for the whole family. Soon after that initial operation she developed and battled through meningitis, and has since endured further surgeries to relieve fluid and pressure on her brain, invasive tests, painful physiotherapy, the side effects from steroids, and continuing debilitating seizures.

Since diagnosis Lyla has had numerous hospital stays, procedures and monitors fitted, sometimes for prolonged periods meaning she has had to be monitored at home too.

Despite almost all of the tumour being removed, it is the resulting scar tissue fusing with a ventricle in the brain that has caused so many ongoing challenges. In November 2018, with the medical team judging that further surgery to try and improve Lyla’s condition was too risky, Paul and Kirsty were advised to “go and make memories”.  

So for 2019 the family set out some very special goals for the year. The first was a true family celebration with Paul and Kirsty renewing their wedding vows surrounded by all their six children. Paul explained “Lyla had always wanted to be a bridesmaid and so this was a dream come true for her. She even had a sparkly tiara and read out her own speech during the ceremony. It was so lovely and moving.”

A second goal was to get national recognition for Lyla’s bravery after all she has been through. In March she reached the shortlist for the Pride of Britain Awards, then in October she was winner in her age category of the WellChild Inspirational Child Award. Along with Paul and older sister Lilley, she really had a night to remember, receiving the award from the Duke and Duchess of Sussex.

 

The third wish was a dream holiday to Disneyland Florida for the whole family, which has now been booked for early 2020, as long as Lyla is well enough to travel. Most recently her consultant has proposed another operation to help drain fluid and relieve pressure on her brain which, it’s hoped, will finally help to stop her seizures.

Whilst they have to wait for specialist equipment to arrive before the surgery can take place, Paul shows the positive and inspiring attitude that young Lyla has. “Our spirits remain high and nothing is going to stop us from enjoying life.”

But he also explains “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 we are committed to doing what we can to raise awareness and help other families try and cope with the devastating effects from childhood brain tumours.”

Lyla's brain tumour journey Facebook page was set up by Paul to help do this. Please visit it here to read more, and follow and share her story.

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