Evie's story

“We were told that Evie had neuroblastoma just before Christmas 2015. In March 2017, Evie got the all clear and rang the treatment belI. During her treatment, I really needed to hear from families whose children had survived, I needed to know that children made it. That’s why I wanted to share our story, to share the good news.” Evie’s mum, Lynsay shares their story.

Diagnosis

Evie before she was diagnosed.

It was in September 2015, when Evie was two that we first noticed something wasn’t quite right. She was potty training so we didn’t think too much of it, but she complained of a bad tummy and kept holding it in.

Then in October, she started getting temperatures, was lethargic, wasn’t eat and was vomiting.

At the end of November, we took her to the GPs because she’d gone really white, with really dark eyes - she looked really unwell.

We were sent to our nearest hospital where they did a few tests and found she has protein in her urine. They scanned her kidneys and found scar tissue. They were doing to do more tests and research and she’d have another scan in February.

But in early December, after being OK for about two weeks, she suddenly couldn’t walk, she wouldn’t eat and was vomiting again. We took her back to hospital where she had an ultrasound scan. They found a tumour. The consultant advised me to call my husband and Evie was taken to the children’s ward straight away.

Are you telling me my daughter has cancer?

“The consultant told that he was 99% sure that it was neuroblastoma, but we’d never even heard of this cancer before. We were in total shock. I remember saying “Are you telling me my daughter has cancer?”

We got help from all our family; my sister looked after our son, and my parents came to sit with Evie whilst we met with the consultant. I was in such shock that they found a tumour I didn’t even register that we were seeing the oncologist.

We were told that they needed to do a biopsy on the tumour - it was the first time we were told it was possibly cancer. The consultant told that he was 99% sure that it was neuroblastoma, but we’d never even heard of this cancer before.

We were in total shock. I remember saying “Are you telling me my daughter has cancer?” and asking how they knew when they hadn’t even done a biopsy yet. But they suspected from the scan and the protein in her urine that it was neuroblastoma.

Treatment

Evie started treatment on Christmas Eve

After that, everything was a rollercoaster. The tumour had spread to Evie’s pelvis, shoulder and spine, had wrapped around her main artery and measured 13 inches.

She had a biopsy on the 21 December and her first round of chemotherapy started on Christmas Eve to target the tumour. It was all happening so quickly.

Her chemo cycle lasted for 80 days - four days on, 10 days off. If she was well enough, Evie would come home but we’d be back at the hospital three days a week getting platelet counts and other checks. We’d be there all day waiting for the bloods to come back and we’d sometimes not be home until around 8pm.

We worked hard to maintain a normal life for our son. We told him the truth about what was happening, but he was only five years old at the time and didn’t really understand. We told him that Evie was very poorly and that she had a nasty bug in her tummy. We explained that it was very dangerous and that the doctors were trying to make her better. He stayed with my sister and her family for most of the time and he was a little superstar.

Evie’s chemotherapy cycle lasted for 80 days.

After Evie’s first chemotherapy cycle, her tumour was measured again. It had shrunk into two smaller tumours - one 2cm and the other was 1cm. The cancer had also gone from her bones. It was such an overwhelming relief but we knew there was still so much to go through.

In April 2016, Evie had keyhole surgery to remove the first tumour, but the second procedure left her with a scar from her tummy button to her side. The doctors also carried out a stem cell harvest, but she was poorly at the time so it failed. The second attempt was more successful, but it was one of the hardest times. They needed to put a line in through Evie’s groin and she really struggled to keep still.

After the stem cell harvest, Evie then had high intensity chemotherapy and wasn’t allowed out for six weeks. She was able to come home once she felt better and started Anti-GD2 immunotherapy. Evie was back at school and all the staff and parents were so supportive - a letter was sent out to all parents asking them to keep their children off school if they were unwell.

“I really needed to hear from families whose children had survived, I needed to know that children made it.

That’s why I wanted to share our story, to share the good news.”

Evie finally got the all clear

Throughout treatment, Evie was always very jolly. She loved music, especially AC-DC and TIna Turner’s Proud Mary! But it took her a long time to get her energy back and was still quite sickly.

She was so proud to be able to walk to school but it made her so tired. The chemotherapy had a long term effect on her but she tried as much as she could to be a normal child.

In March 2017, Evie finally got the all clear and she rang the treatment bell. The whole family was there and everyone had a big party on the ward. And we had another party when we got home! Evie is amazing. She’s full of character, she’s so funny and it’s wonderful to see her doing normal things.

I found it really hard to stay positive during Evie’s treatment - there wasn’t much to keep you motivated. I really needed to hear from families whose children had survived, I needed to know that children made it. That’s why I wanted to share our story, to share the good news.