It was Christmas 2021 when 11-year-old Evie started experiencing headaches, sight problems and double vision. Her symptoms deteriorated and a seizure and vomiting followed. She couldn’t feel her arms and legs and wasn’t able to move because she was in so much pain. It was an incredibly scary time for the family as they tried to find a diagnosis, with an MRI eventually revealing that Evie had developed a rare childhood brain tumour called a pilocytic astrocytoma (JPA).
Evie said, “I remember the build up to the diagnosis clearly. I was googling online to try and work out what was wrong, and I said to my Mum ‘I bet you any money I’ve got a brain tumour’. So I wasn’t surprised when I was told and I felt quite proud of myself and my Mum that day as we’d pushed through and trusted our instincts.”
Evie was rushed to Great Ormond Street Hospital (GOSH) where they were greeted by a Neurosurgeon who told them that the tumour had blocked the flow of spinal fluid, causing a build-up, headaches and blurred vision. Evie arrived at GOSH on the Wednesday and had brain surgery on the Friday to have a shunt inserted in her brain. Her symptoms improved straight away.
“I woke up and I remember looking around, feeling so much better. I didn’t have any pain and felt pretty fantastic (although the morphine drip helped).”
Mum, Hannah said, “It was a terrifying time for us all and such a relief to see Evie feeling better straight away. She was so exhausted and slept for a couple of days after surgery. We then started to talk with the Doctors about the best way to treat the tumour going forward. The tumour was inoperable as it is in the centre of her brain and there were huge risks of memory loss and organ / hormone damage, and she was too young for radiotherapy. We started an 18-month course of chemotherapy encountering all sorts of issues along the way including hair and weight loss, seizures and short term damage to her hands and feet.
“It was such a gruelling 18 months, which hugely impacted her schooling and ability to do things she enjoyed, such as art. Spread a Smile had been mentioned to us early on and we got in touch to see how they could help. We chatted about what Evie was interested in. As she was so unwell during treatment, she couldn’t do much, but was able to join online art sessions with Spread a Smile every two weeks.”
Evie said, “I wasn’t going to school and didn’t really have anything to do, so it was brilliant to take part in the Spread a Smile art sessions. They made me feel much happier and like there was someone else out there who really cared for me beyond my family.”
Mum Hannah said, “The effects of the chemo hit Evie really hard, and I felt so sad for her as I knew she loved drawing and creative writing so much. The art sessions gave her the chance to do that again and express herself. She would come to me after each session so excited to show me what she’d done and she absolutely loved it. It sounds like a cliché, but Spread a Smile does just that, they make people smile. It was so lovely for Evie to have something that brought a little bit of normality and fun back to her.”
Since her treatment ended, Evie’s life is back on track, her hair has grown back, and she is back in school full time.
“The tumour has shrunk from 4cm to half a cm and even though the cancer is still an unknown, we live for the here and now.” Hannah said. “Spread a Smile have been amazing through it all. Kiri who does her sessions with her has really brightened her days and Evie still does the sessions once a month as she loves them so much. We’ve also been to some of Spread a Smile’s family events which have been brilliant and we definitely recommend them. We went to the Christmas Party as a whole family, and it was just amazing – so special as Evie had just finished treatment and we were thoroughly spoilt.
“I was apprehensive about signing up for support at first, but I needn’t have been. Everyone at Spread a Smile has made us feel so welcome and loved. They make such a difference to families like ours, supporting us during such difficult times. It’s nice to have people like Spread a Smile around when you need them and we can’t thank them enough for their kindness and support.”