“I don’t know how I would have coped without LATCH”

At 10, Amelie was diagnosed with medulloblastoma, a fast-growing brain tumour. Her mum, Lisa, shares their story.

Getting Diagnosed

Amelie was 10 when she was diagnosed with medulloblastoma. It was 2017 and she was incredibly sporty then. She did a different sport every night of the week – swimming, running, netball, hockey. Then, suddenly, she wasn’t able to.

Mum Lisa informed us, she started getting infrequent headaches. The GP thought it was abdominal migraines because she was getting tummy pains as well. We had to keep a diary and she had some migraine tablets but they weren’t touching her. Then Amelie started being sporadically sick. Nothing was adding up. When I took her for an abdominal scan, I asked for her brain scan to be expeditated as she was getting more and more poorly.

When we went in for her MRI, a mass of people came into the room, and I thought ‘There’s something wrong here.’ That was in the afternoon at Withybush General Hospital, our local hospital. By the evening, we were at the Children’s Hospital in Cardiff, where LATCH is based. And two days later, Amelie was operated on.

After the scan, I was told that there was a mass on Amelie’s brain. I was terrified. My whole world imploded. Amelie felt relieved that she was being listened to and quite excited that they were going to sort it out. She didn’t realise then that there would be consequences for the intensive physiotherapy, six weeks of radiotherapy and eight months of chemotherapy, and how poorly she would feel at each stage.

Home from Home accommodation

We’re 100 miles away from the hospital. When I realised that we would have to come up to Cardiff for Amelie’s treatment, I thought, ‘What do we do?’ But the staff told me not to worry as there’s LATCH for oncology kids. So, when Amelie had six weeks of daily radiotherapy, we used the LATCH facilities in their home from home accommodation.

Financially, the accommodation takes the pressure of having to pay for a bed and breakfast or whatever, and it means you can stay close to your child when they’re really poorly. Without it, I would have had to commute 200 miles a day for Amelie to have her radiotherapy.

How Amelie is doing now

Amelie rang the bell on 22 April 2018. It was scary when treatment stopped but we worked on getting her stronger. She had a tough time going back to school as she had missed year seven and integrated back into year eight. She was 12 going on 25 because she’d had to grow up so much during treatment.

Immediately after treatment, and the following year, we used the LATCH caravan in Lydstep in Pembrokeshire. The break helped an awful lot. The kids really enjoyed it. Our LATCH Social Worker, Katie, also referred us to Starlight Children’s Foundation which organised Amelie’s big wish with to go on safari in South Africa. It was fantastic and a holiday to remember.

Despite the challenges Amelie faces, she remains determined. She’s still into riding and started University in September 2024. I’m thrilled to see her move on to the next stage of education.

Amelie’s Rainbow

If LATCH was not there, I don’t know how I would have coped. They supported us in lots of ways. I had this underlying knowledge that there was someone who I could phone and say, ‘How do I do this? Where do I do that? or just ‘Help! I’m having a rubbish day.’

The chaos that cancer causes to a family is indescribable. LATCH took the edges off the hideousness of it and their support was invaluable.

Because LATCH was such a huge support to us, we wanted to give back to them so they could carry on supporting other families. We set up Amelie’s Rainbow, a charitable fund, a month after she was diagnosed. Friends and family did fundraising in Amelie’s name and the fund shared the money with the charities that had helped us. We’ve raised £15,000 for LATCH through the fund and around £45,000 in total.  

Future Thoughts

Amelie’s cancer journey isn’t one I would have chosen for our family. It has affected her and Hugo’s lives dramatically. I wouldn’t wish it on anyone but we are stronger for it. It’s made me thankful for every day I have with my children.

And for LATCH, I hope they continue to support families like ours because, at the moment, this disease isn’t going anywhere. Their support is invaluable.