Esme’s Story: CLIC House kept her family together at Christmas

Esme was diagnosed with rhabdomyosarcoma (a form of soft tissue cancer) at just three years old. She went on to have nine rounds of chemotherapy treatment as well as radiotherapy and surgery at Bristol Children’s Hospital.

Esme’s family stayed at our Home from Home CLIC House nearby to the hospital while she was in hospital over Christmas, which helped them to keep together and share special memories that they otherwise would have missed out on.

“We were on a family holiday in Cornwall camping, in the caravan. One day she was walking down to the caravan at night, she was hot so we took her t-shirt off and where the lighting was a bit strange I could just see a shadow cast on her back. I asked her to come over and there was a lump just sitting on the inside of her left shoulder blade and I thought ‘that doesn’t look good’.

“We were going around the houses like ‘has she fallen over? Has she dislocated something? has her shoulder blade popped out?’ but she wasn’t in any pain and she could move her shoulder, she didn’t know what it was. I went straight to ‘this isn’t good’”

Her parents took her to the doctors the next day and they suggested going to Bath hospital. They arrived at Bath hospital at 9am the following morning and by 5pm that evening they were told ‘it’s cancer’.

She had to have various other tests, including an MRI, to determine if she had any secondaries (if it had spread).

“We had one weekend where they did tell us they thought something on her lungs could be a secondary and we thought ‘if that’s the case we could lose Esme’. They talk about single percentage survival rates if there’s secondaries. It came back it wasn’t but there was a weekend where all bets were off. It’s horrible. It was the worst weekend of my life without a shadow of a doubt.”

Esme went on to have nine rounds of chemotherapy treatment, which meant being in and out of hospital for months – she couldn’t start school and spent a lot of time away from her older sister, Olivia.

“From finding a lump on a holiday in Cornwall to first chemotherapy was three weeks. It was a very scary time but you just fall into a routine, very quickly you put everything to one side as much as you possibly can and you get into a new routine of life like trying to keep Olivia our oldest daughter doing everything she’s normally doing, school all that kind of stuff, while getting Esme to her appointments.

“Olivia when we sat down and told her, Esme wasn’t there at the time, she was 8 at the time and literally the first question she said was ‘is Esme going to die?’ She was that bit older, she knew what cancer is and she knew the seriousness of it and we said to her ‘the doctors are treating her to cure her and we’re going to do everything we can to make sure she’s ok, and that’s all we know at this stage, but they are confident they are treating to cure’

“From a mental health perspective for Olivia, she suffered because one thing we hadn’t quite realised was when Esme would spike a temperature in the middle of the night and I  would normally take her into the hospital and Anne would take Olivia to school. She would be like when I wake up in the morning I didn’t know if my sister would be there and which parent would be there. That loss of control i think was massive for her.”

Esme had to go into hospital around Christmas time in 2021. Their social worker, Lorna, helped to arrange for them to spend this time at CLIC House so that Esme and Olivia got the chance to see each other and the whole family could be together too.

“Knowing she was close to Esme made a big difference. We’d go for a walk in and around Bristol, it meant we could get out as a family. It helped Olivia a little bit to fill in some of the gaps and paint the picture. She could see the front of the hospital and know that that’s the building that Esme goes in and we could show her the room and the floor. I might walk down with Olivia and wave at Esme from the window at the hospital.”

Staying at CLIC House was more than just a place to stay, it meant they could make Christmas memories together they might not otherwise have been able to have.

“Even though Esme was in hospital, we knew that when treatment finished we could do Christmas things, like go see the Christmas lights together. Being able to stay at a Home from Home helped us to stay together as a family during the hardest time.”

Lorna was also able to support Esme’s family by helping them to access financial support, to help with the costs of travel to and from the hospital.

“I think we might have got there [without her support] but I just think it would have been a struggle, the stuff like the DLA and blue badge, how else would we have known we were able to claim that? I suppose the doctors might have handed us a leaflet but to go through that whole process on our own would have been hard and i assume without it there would be a lot of parents who don’t get those benefits that don’t get the help that’s needed and I’m very thankful for Young Lives vs Cancer.”

Esme has now finished treatment and is in remission. After missing her first year at school, she has started back and is enjoying being at home with her friends and family.