Evie's story
Evie and her identical twin sister Ella were born three months premature in May 2016. They weighed just over 2lb and were in intensive care for two weeks. But after going through so much at such a tender age, Evie was soon to endure another fight for her life. Shortly before the twins’ first birthday, aged just ten months, Evie was diagnosed with stage four high risk neuroblastoma, a rare and aggressive childhood cancer.
Imogen, Evie’s mum shares their story.
“Before even hearing what they had to say, I burst into tears. Our girls had already been through so much and we were absolutely devastated that Evie had something else wrong with her. ”
“In the January of 2017, Evie started to have huge vomits every 3 - 4 days. The bouts of sickness were completely random, they weren’t after a feed so we ruled out reflux. She didn't have any other signs of illness but we wanted to get her checked out anyway. Our Health Visitor told us not to worry and the GP didn’t know why Evie was being so sick.
Thankfully, we were seeing our Consultant on a regular basis to monitor the girls and in February, we raised our concerns. She told us that Evie’s liver felt quite big; she normally wouldn’t be concerned but because of her vomiting, she sent her for a scan to help ease our minds. She didn’t think at this point that there was anything to worry about.
After the scan, the team wanted to speak to us that same day. We knew they must have found something to call us so urgently - normally we’d have to wait a few weeks for the results. Before even hearing what they had to say, I burst into tears.
Our girls had already been through so much and we were absolutely devastated that Evie had something else wrong with her. It felt like we’d barely been out of the hospital for two minutes when this then happened.
When I heard the doctor say the words ‘We think it's cancer”, I just remember crying and screaming. The first thing you think is that your child is going to die. I couldn’t lose my baby. My husband was absolutely gobsmacked.
Evie was such a healthy, happy little girl apart from the vomiting. We had no idea it could be something so serious.
Evie’s diagnosis and treatment
“...you have no choice. You have to put your child through this horrendous treatment to give them the best chance at life... ”
The next day, we had an appointment at Leeds and the consultant told us that it could be neuroblastoma. At this point, because of Evie’s age, he thought it was stage 4s neuroblastoma.
After two months of tests including MRI scans and MIBG scans to check for growths, Evie was diagnosed with stage 4 neuroblastoma. The tumour had spread to her liver, her kidneys and the surrounding tissue. She started chemotherapy straight away - three rounds of low dose chemotherapy, and then high dose chemotherapy for 5-6 months.
It was really hard to see Evie going through this intense treatment. She had been fine before the chemotherapy started so you could really see the effect it was having on her - the pain, the side effects, and we didn’t know if it was even going to work. But you have no choice. You have to put your child through this horrendous treatment to give them the best chance at life.
It’s a blessing that Evie had cancer when she was so young as she didn’t really know what was happening. Her twin Ella was more aware, she really looked after her sister. Ella was desperate to play with Evie and would get upset if Evie was upset. She’d stand and watch quietly when we were changing Evie’s dressings or would go and get her toys when she was on a drip.
The consultant warned us that if one of the tumours was very close to a major organ or her arteries, they might not be able to remove it all. Evie had already had the most amount of chemotherapy she could’ve had so they couldn’t do any more apart from operate. But then new research had discovered that an extra round of chemotherapy, on top of the standard protocol could help shrink the tumour even more.
Surgery, remission - and new baby sister!
“Two days after surgery, Evie was crawling around the hospital and was able to come home. You would never know she had been so poorly. She’s my hero. ”
So finally, after months of chemotherapy, Evie was ready for surgery in November. After four hours, the surgeon came out of theatre. The tumour was completed dead and it all came away in surgery. It was the best moment of our lives. We didn’t expect to hear such wonderful news, and it was just an amazing feeling.
Two days after surgery, Evie was crawling around the hospital and was able to come home. You would never know she had been so poorly. She’s my hero.
Just before Evie’s diagnosis, we found out that I was pregnant. Because of all the trauma we’d been through with the twins being born so early, we didn’t tell anyone until I was 32 weeks pregnant. I was convinced something would go wrong but thankfully, Lillie was born healthy at full term in February 2018, two months after Evie went into remission.
Life in lockdown - and a new perspective
Both Evie and Ella are still really small - the three girls look like triplets! Evie is much more confident and vocal, but they are both really similar. They are due to start school in September and are both really excited. We’ve got their uniforms, they’ve met their teacher on Zoom and they can’t wait!
Life was full on before lockdown, and we’ve been grateful to spend so much time together as a family. We really needed it. It can be utter chaos some days but we feel very lucky. We’ve got a new perspective on life. Every time Evie has a tummy ache, it fills me with dread but as time goes on, it gets much easier.
We’ve raised lots of money for Neuroblastoma UK and other children’s cancer charities from headshaves to skydives and pub collections. We still want to do all we can to help. By sharing our story, hopefully we can help raise awareness of this horrible disease and help other families going through a similar ordeal.”
How you can help
We don’t receive any government funding and rely on your generous donations to continue our fight against neuroblastoma.