“Isla was a happy, bright, bubbly five-year-old; she’d just started school, and she loved animals and Formula 1! We never had any reason to believe she was unwell and the first five years of her life were totally amazing. Sadly, this all changed overnight when she was diagnosed with an aggressive brain tumour called DIPG. Within nine months of that diagnosis, Isla was gone.” - Steph, mum to Isla
When she was diagnosed we weren’t given much information; we knew it was inoperable, and that radiotherapy might give us more time with Isla, but nobody would really tell us in black and white what to expect. I just remember being told by everyone we spoke to that we needed to ‘go home and make memories’, and that was it.
When we were referred to Demelza, Sacha, a Demelza nurse, told us some of the services we could access but I just thought ‘we don’t need a hospice, leave us alone’! Thankfully she kept trying, and eventually we said yes to a home visit so she could do some activities with Isla. I really wish I could turn back time and say yes sooner because Isla absolutely loved it.
Visits from Demelza were a regular thing after that, and they did everything from Halloween crafts to cooking to stamping handprints on paper. We had outings with Demelza too; they took us all to an animal centre nearby and Isla got to hold all kinds of creepy crawlies. Having a tarantula on her head was probably her favourite memory from Demelza!
The fun was important, but we also felt like we could talk about the worst case stuff with Sacha – like what would happen if Isla needed a nasogastric tube to eat, or what would happen after she died. Demelza were the only people we felt we could trust to speak openly and have those conversations with us.
When Isla’s health deteriorated, it happened quickly. One Friday morning she started being sick and she couldn’t stop; we had to get a team out to put a nasogastric tube in for her so we could give her medication, and on Saturday Sacha came out from Demelza to show us how to use it. We got Isla comfortable, and Sacha kept checking in with us that day to see how we were getting on. We went to bed at about 10pm on Saturday, and when I woke up at 1am Isla had gone. It was that quick.
It was the worst moment of our lives, but I’m so grateful we had Demelza there to support us – it wasn’t a stranger who came out to see us, it was Sacha. That bond made it easier.
We took Isla to Demelza after she passed, and we spent five days with her there. ‘Amazing’ isn’t the right word for the time we spent there because it was such an awful thing – we’d lost our little girl – but I’m so grateful for it. There was a night during that time that was, to me, more important than Isla’s actual funeral. Isla loved our pizza and prosecco nights – we would order in pizza, the grownups would have prosecco and Isla would have her own glass with lemonade in it! That night at Demelza we invited all of our closest family, ordered takeaway pizza, and opened a bottle of prosecco for one more pizza and prosecco night with Isla – it was so special to have everyone all together, doing what Isla would have wanted.
They still support us now, more than a year on; we attend their bereavement events which give us a chance to remember Isla, and also to connect with other families who ‘get it’. I do actually want to talk about Isla, and I want to hear other people talk about her and say her name, but it can be awkward – so going to Demelza for these events is really special.
I don’t like to imagine what things would have been like without Demelza; some of Isla’s favourite memories were made there, and some of ours too. I’m so grateful for all of the support we’ve had.” – Steph, mum to Isla