Lily's story
Lily is now 11 years old
“My youngest daughter Lily was diagnosed with neuroblastoma as a baby. Because of her treatment, she now has tinnitus and ankle-tightness. She needs to do regular exercises and wear in-soles but she never moans and always gets on with things. Even when she’s in pain, she never complains or gives up.
“Now at 11 years old, she loves to run, trains every week and wants to be the next Jessica Ennis!”
Lily’s mum Angela tells their story.
Symptoms and diagnosis
“Lily was diagnosed with stage four, intermediate risk neuroblastoma on 27 June 2011. I’ll never forget that date. I just felt numb. When you’re told your child has cancer, it feels like you’re hearing the wrong thing. It’s just not normal. ”
Lily suffered from recurrent eye infections
“Lily suffered from a recurrent eye infection when she was about six months old. Her eyelid also looked quite droopy. She hadn’t been unwell at all and looked really healthy but I knew something wasn’t right.
We also noticed that she was quite sweaty, but only on one side of her body. I was worried that it might be cancer because Lily’s uncle had cancer as a child and passed away at a young age.
“When I raised it with the health visitor, they immediately noticed that her pupils were different sizes. We were referred to the hospital for x-rays and blood tests, but nothing odd showed up. It was only when she had a urine test that cancer markers were found. Her primary tumour was in her chest and was the size of a peach stone. The doctors told us that ‘it wasn’t that big’ but when it's your six month old baby, it was huge for us!
“Lily had a follow up MIBG scan to look for abnormal cells, and her whole skeleton lit up. It was so scary to see, I had to ask the doctors to turn off the machine. I didn’t want to see the images anymore.
“She was diagnosed with stage four, intermediate risk neuroblastoma on 27 June 2011. I’ll never forget that date. I just felt numb. When you’re told your child has cancer, it feels like you’re hearing the wrong thing. It’s just not normal. We had a family holiday booked and the doctors told us to go and enjoy some family time before she started treatment in September.
Surgery and treatment
“...despite everything, Lily was a smiley, happy little girl during her treatment. She even learnt to walk whilst in hospital - you never imagine your child will be in hospital when they reach milestones like that.”
Lily as a baby in a hospital bed
“Lily needed surgery to remove the tumour and thankfully they managed to remove the whole thing in one go. After that she had chemotherapy to zap the cancer cells in her bones. The chemotherapy was meant to make her better, but it also made her so poorly. She was always picking up infections.
But despite everything, Lily was a smiley, happy little girl during her treatment. She even learnt to walk whilst in hospital - you never imagine your child will be in hospital when they reach milestones like that.
“When Lily was diagnosed, her older sister Grace had just started nursery school. Their dad stayed at home with Grace and did all the school runs. I stayed with Lily in the hospital and it was really hard being away from Grace and the constant back and forth.
Embracing life after cancer
“ She’s always been aware of what she went through as a baby and absolutely embraces life...She makes me very proud.”
Lily started secondary school in September
“We don’t hide the fact that Lily had cancer from her. She’s always been aware of what she went through as a baby and absolutely embraces life. She has different coloured eyes because of the Horner Syndrome and is really proud of them! She loves visiting farms and in the future, she hopes to look after animals.
Lily started secondary school in September and despite recently being diagnosed with dyslexia, she’s settled in really well and loves the routine of being at school.
Lily also regularly raises money for the hospital that treated her. We recently held a table top sale in our local community hall and Lily organised the whole thing. She makes me very proud.”
How you can help more children like Lily
Donate today to help fill our virtual lab* with essential research equipment.
Around 100 children like Lily are diagnosed with neuroblastoma, a rare and often aggressive cancer, every year in the UK.
This year, we’re celebrating 40 years of fighting childhood cancer. We want to raise £40,000 to help fund future research that hopes to develop new, kinder treatment for children with neuroblastoma.
Help us reach our target and donate today to help fill our virtual lab* with essential research equipment.
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