Evie's story
Evie was diagnosed with stage L2, intermediate risk neuroblastoma in September 2020, when she was 21 months old.
“Evie has been so resilient, happy and amazing throughout her treatment. But we know things could be so different if we hadn’t taken her to the doctors when we did. One year later, she’s doing really well and is a feisty, energetic 2.5 year old. It’s so important that there is more research into neuroblastoma to help more children like Evie.”
Evie’s mum Kelly has shared their story to help raise awareness of this little known but aggressive childhood cancer.
Evie’s symptoms
“Evie caught Harry’s cold and was a bit wheezy. Looking back, her walking was also a bit funny, but it wasn’t enough for me to worry about...But then when her nostrils started flaring whilst she was breathing, I knew something wasn’t right. ”
“Evie always walked loads and had so much stamina!”
“Evie’s older brother Harry always had a weakness in his chest and had pneumonia three times, so when Evie had a cold that she couldn’t shake, we just assumed she had the same weakness. Whenever she caught a cold, it would go straight to her chest; this happened two or three times but a nebuliser would always fix it.
In September 2020, Evie caught Harry’s cold and was a bit wheezy. Looking back, her walking was also a bit funny, but it wasn’t enough for me to worry about. She always walked loads and had so much stamina!
But then when her nostrils started flaring whilst she was breathing, I knew something wasn’t right. She was clearly putting in a lot of effort to breathe, so I called 111. The paramedics checked her out but all her obs were fine and she was running around again.
The next day, I took her to the doctors; I was worried that the GP might think I was panicking over nothing but something inside just didn’t feel right. She was sent for a chest x-ray and a couple of days later, the doctor rang and told us to bring her to hospital the next day. There were a few shadows on her chest but we didn’t really know what that meant. Evie was at the childminder at the time so I rang to check how she was but the childminder said she was absolutely fine. I was worried but because Evie was so well in herself, I didn't panic.
But when we arrived at the hospital, I knew that something wasn’t right. The doctors were waiting for Evie and they all knew about her. We were told that the scans showed a tumour in the back of her chest and that it went into her spine. The doctors were worried as the tumour was so big; it covered the whole of her chest and there was a 13% leeway before her spine was completely compressed.
Evie’s diagnosis
“When they did confirm it was neuroblastoma, I just broke down. I was still hoping that it would be something else and not cancer, just a benign tumour. ”
Evie was sent to St George’s Hospital in London where she had a Hickman line fitted, bone marrow biopsy and bloods taken. We didn’t really fully understand what was wrong, the doctors told us that they thought it was neuroblastoma but we had never heard of it and the doctors couldn’t confirm anything for a few days. When they did confirm it was neuroblastoma, I just broke down. I was still hoping that it would be something else and not cancer but just a benign tumour.
When the doctor showed me the X-ray and explained that Evie had a tumour, her dad was still parking the car so I was alone trying to process this information. I had to tell her dad over the phone due to the pandemic and only one of us being allowed to be with her, and that was incredibly tough.
The consultant took me into a room to explain everything. Best case scenario was that Evie would need chemotherapy every three weeks as an outpatient, worst case she would be admitted to The Royal Marsden for treatment every 10 days
We had to wait a week to find out what stage neuroblastoma Evie had. It was the hardest time - I felt like I couldn’t protect either of my children. Harry couldn’t understand why myself and his step dad were needing to stay away at a hospital in London with Evie and I didn’t want to tell him over the phone. His step dad lost his dad to cancer so I knew Harry would be so worried about his little sister when he heard that word. I wanted to go through everything with him - we got so many books from the hospital which really helped.
Treatment
“(the doctors) wanted to start treatment straight away...The urgency of it made us realise how important that chest x-ray was and the fact that it (the tumour) was found when it was. ”
Evie initially needed six rounds of chemotherapy every three weeks.
Evie was diagnosed with stage L2 intermediate risk neuroblastoma). Thankfully the cancer hadn't spread and it wasn’t in her bones. We were really surprised about this as the tumour was going into her spine.
She needed emergency chemotherapy that night - the doctors were worried that the cancer was aggressive and would spread, so wanted to start treatment straight away rather than risk waiting over the weekend. The urgency of it made us realise how important that chest x-ray was and the fact that it was found when it was.
Evie initially needed six rounds of chemotherapy every three weeks. She stayed in hospital to see how she would cope after that first round of chemo, and she did really well so she was then treated as an outpatient back in Brighton. I was so pleased to take Evie back home and it was great to give Harry some normality and schedule with school.
After six rounds of chemo, the plan was for Evie to have surgery. But her tumour shrunk massively and completely came away from her spine, with a little left by her aorta. As the surgery was so high risk, the doctors wanted to give her a further two rounds of chemotherapy instead. The tumour that was left was believed to have mainly died off so after consulting with the national neuroblastoma board, they decided to leave the 2.2x4.1x8.5 tumour inside her.
She did need keyhole surgery for more biopsies which showed that she had ‘favourable biology’ and that only a few minority of cells were still alive. To zap the final cells, Evie needed 12 rounds of radiotherapy in May, which she coped well with. It is a more gradual change than the chemo but the first MRI she has had since the radiotherapy is already showing shrinkage taking the tumours measurements now to roughly 1cmx8cm. She’s now on retinoic acid for six months until the end of November/December and will need an MRI every three months to check there are no changes.
"Resilient and amazing through treatment"
“You always think it ‘won’t be you’ and we never expected to hear that our daughter had cancer. But we are so grateful that we took her to the doctors when we did.”
Evie would always bounce back so quickly after treatment
Throughout her treatment, Evie had so much energy. So many people were amazed that she was running around and apart from her tube, you wouldn’t really know she had cancer. She’s been so resilient and amazing throughout her treatment.
When we were in the thick of all the craziness of her treatment, she just got on with it. We thought it would be really hard with Evie being so little, but in a way that’s easier. She has been so good at all her appointments (she just wants to play!), she’s not had any anxieties or fears that an older child or adult may have. And if she was happy, we were happy.
It was scary with some of the side effects but she would bounce back so quickly. She didn’t lose her appetite at all and would eat and drink her way through it. Even after being in ICU after having her chest drain removed, she wanted to play.
You always think it ‘won’t be you’ and we never expected to hear that our daughter had cancer. But we are so grateful that we took her to the doctors when we did. It all seems a bit harder now in a way as we’re not in hospital all the time but we are getting back to normal and coming out the other end. Evie loves being with other children and is so sociable, she’s back at the childminder now and loves it.”
Childhood Cancer Awareness Month
This September, we’re raising awareness of this rare cancer to help save more young lives like Evie’s.
And you can help. Wear a gold ribbon, take part in an event, read our information or share your story to help fight childhood cancer together.