Keira

Keira was born during the Coronavirus pandemic – and at just six weeks old, she was diagnosed with a rare and aggressive brain tumour. Her mums, Lesley and Claire, believed they were going to lose their little girl – until a unique treatment gave them hope. Five years on, Keira is thriving, and Lesley and Claire tell us Keira’s story, and why ‘Make a Move!’, our sports event for children with cancer, is vital to their family. 

“During the height of the Coronavirus pandemic, we had our daughter, Keira. She was born with a brain tumour, but we didn’t know it at the time. 

We went to the GP when she was eight weeks old for vaccinations and a check-up. We’re sure that visit saved her life. Keira had been vomiting quite badly and was acting very irritable and not like herself. The GP recognised that Keira’s eyes were ‘sunset’, meaning they drifted downward, and her head was enlarged. The GP put all of this together and came to a terrifying conclusion that she didn’t disclose to us at the time: Keira had a brain tumour. 

We were sent straight to A&E knowing something was seriously wrong. Because of the restrictions, only one of us was allowed in. Keira had a CT scan almost immediately and within an hour, we were given that life-changing diagnosis. The doctors described the tumour as the size of a tennis ball – which, for a newborn, meant there was more tumour than brain. 

She had major brain surgery four days later. We were sat down by our surgeon beforehand and warned that there was a significant chance she wouldn’t survive the operation – but that if he didn’t try, she had two weeks to live at best. 

At this point, she hadn’t even had the chance to meet any of her extended family. So, the hospital was incredible and allowed us to have family and meet her for ten minutes each, all the while knowing it could be the last time they see her. 

Keira spent 15 long hours in intensive brain surgery, absolutely storming it to make it through. Phenomenally, they removed all the tumour, but the change was too much for her brain, which had been pushed and squeezed to its limit. Once the tumour was removed, her brain collapsed, leaving Keira with seizures that went on for weeks. 

She was completely mute for eight weeks after her surgery, too. She couldn’t even cry. Doctors weren’t sure if she’d ever regain the ability to make noise. And then one day, while she was having her dressings changed, she started crying – and people must’ve wondered why we were so excited  to see our baby cry!

They tested the tumour and discovered it was an ‘Atypical teratoir rhabdoid tumour’ – or ‘ATRT’. They are rare, aggressive and fast-growing. This was horrific news, because in babies as young as Keira, they are almost always fatal. The only known cure for it is radiotherapy, and hospitals won’t irradiate the brain of a baby as young as she was. We were referred to a children’s hospice to live out the rest of her days as comfortably as she could. 

But not long after that, one Tuesday afternoon, we got a phone call out of the blue telling us the hospital had approved Keira for a very new, intense chemotherapy treatment. We were told the new treatment itself had a high likelihood of being fatal, and although it hadn’t yet been successful on any other child, we knew we had to take every chance possible to keep Keira with us. We just had to hope that she had the fight in her. 

Because the treatment was very aggressive, especially for a baby of Keira’s age, the hospital team had to agree for her to receive it. They voted in favour because they’d already removed the tumour in full and because she was a chunky monkey who loved her food! So, she was already at a good weight to keep her healthy as possible during the treatment. 

In short, she was absolutely unbelievable. She was on high-dose chemotherapy treatment which led to her being fed through a ‘TPN tube’, which fed the nutrients she needed through a vein and directly into her system. But she was back to wanting milk within just days, which is incredibly rare. There were ups and downs, and a few scary times when it looked like she’d need to be transferred to the Paediatric Intensive Care Unit (PICU), but she always pulled herself around from it. 

Doctors we’d never met before would come up to us and greet us, because they’d heard about Keira. 

Something that’s also been a real support to us has been the ‘Beads of Courage’ initiative. They’re in hospitals across the country, and the idea is that a child earns a bead for all sorts of milestones, small and large, and each bead symbolises something different. There’s even a bead for a stay in the PICU. Except, Keira never once needed to go onto PICU – she always pulled herself around before she got too ill. So, we asked for the bead, framed it, and proudly wrote, “We never earned this bead.” 

Four years ago, we came to The Grand Appeal’s first ever ‘Make a Move!’ event. A sports and activities day designed entirely for children who have had treatment for cancer or a blood disorder. We’ve come to every event since. Going places with Keira can be difficult because it often exhausts and overwhelms her. She doesn’t do well with loud noises or crowded spaces, and her brain is working so hard that she has cognitive fatigue. She has to nap every day just to regain some energy. 

That’s why we love ‘Make a Move!’ so much. It’s designed with kids like Keira in mind. Everyone there – from the staff to the other parents and children – will all have an understanding, a shared experience, that you just can’t find out in the world most of the time. 

‘Make a Move!’ is an important event, and one we’re grateful to have. There are so many activities to try, Keira’s fully included and everything’s accessible for her. Even when there are crowds, we’ve got the option to move to a different activity because there’s so much choice. 

It always feels welcoming – when she wants to try a new sport, and she might take a couple of minutes to get used to it, there’s no pressure to rush. Everyone understands, and that soft and patient environment means she actually gets the chance to try new things and discover new hobbies. And that’s so important to us – she doesn’t often get to have new experiences without it being stressful and overwhelming. 

We can bring our eight-year-old son, Austin, too, and getting to spend the day together as a family is really important to us. It can be tricky, having a sister with a brain tumour – but ‘Make a Move!’ really helps reframe negatives into positives.  

Austin has met Olympians, has held the Olympic torch and gold medals, and gets stuck into new sports too.

We feel so lucky to still have such support from the hospital, years later. From kind and empathetic staff to events like ‘Make a Move!’, we know Keira is accepted and understood here. 

Not only is it a great day, but it’s allowed us to access resources that support us in our daily lives, like an inclusive bike trailer perfect for Keira’s needs!  

So much can change in a short space of time. We’ve just been lucky enough to visit Disneyland – a magical trip we never thought we’d make. We’re so proud to say that Keira is coming up to five years cancer free, and thriving.”