Lily's story

Lily and her mum Alex

Lily was diagnosed with low-risk neuroblastoma when she was just over one year old.

“By December 2019, Lily was thankfully in remission. We were lucky that she was at an age where she didn’t really know what was going on. We can start to hope for the future and put it all behind us.”

Lily’s mum Alex shares their story.

Lily’s symptoms

“We never thought anything was seriously wrong because Lily was totally normal outside of coughs and breathing episodes.”

Lily was admitted to A&E a few times with suspected bronchiolitis.

“It was a few months before Lily’s first birthday when she first started to show (what we now know were) symptoms of neuroblastoma. Whenever she caught a cold, it would always go straight to her chest. She’d be quite wheezy and the GP gave her an inhaler as they said it could be asthma.

Because of Lily’s age, we were admitted to A&E a few times with suspected bronchiolitis; she was much better after having oxygen and was fine at all her check-ups. We never thought anything was seriously wrong because Lily was totally normal outside of these coughs and breathing episodes.

Then one day, whilst we were staying with friends, Lily became quite unwell. She’d been absolutely fine all day but in the evening, she had a high temperature, was struggling to breathe and was sick. I immediately took her to the local A&E where she was examined and they sent her for a chest x-ray. She’d had quite a few visits to the GP and hospital in the previous three months so I think they wanted to see if there was anything else wrong.  I was told that they found ‘something’ on her x-ray, so she was booked in for a CT scan that night.

We were told it could be cancer

“(the doctor) woke me up and sat me down - that’s when he told me that it could be cancer. It came as a huge shock; it felt like I’d been punched in the chest. ”

Lily was flown to Liverpool by helicopter.

During the CT scan, I knew something was wrong as all the doctors were crowded around the screen. A couple of hours later, a doctor came to speak to me. He woke me up and sat me down - that’s when he told me that it could be cancer. It came as a huge shock; it felt like I’d been punched in the chest. It was awful. I was also on my own in the hospital with Lily as we live in the North. But I called my husband straight away and he got on the first train to London in the morning.

The next day, we were transferred to a more specialist hospital. Lily needed loads of tests and scans, and needed to start treatment immediately. When the hospital knew we weren’t local, they arranged to have us transferred to Alder Hey Hospital so that Lily could have treatment closer to home. Lily was very poorly at this stage, she was on a drip and really wasn’t herself.

Lily and I were put in a helicopter and flown to Liverpool. In other circumstances, it would have been quite exciting - and loads of kids came to the windows to wave at us when we arrived at Alder Hey. My husband Martyn had to go and collect our car from our friends’ house and then drive all the way back to Liverpool alone - it was awful for him not being with us.

When we were led to the oncology ward, it felt really premature and I couldn’t understand why we were there. Lily started all her tests - urine tests, ultrasound on her tummy, another CT scan and an MRI scan. The doctors didn’t want to give her an anaesthetic for the MRI because the tumour was pressing on her airway, so Martyn and I had to go in with her. She also had an MIBG scan and lots of blood tests. Because she had such little veins, it was really hard to get blood and it was so upsetting to see her frightened.

A neuroblastoma diagnosis

“It took a few weeks for Lily’s cancer to be staged. The medical team originally thought she had low-risk neuroblastoma, then they thought it had spread to her lymph nodes. ”

The doctors thought Lily had neuroblastoma due to the mass in her chest and her urine tests. She started chemotherapy that day.

Finally, the doctors had enough information to confidently say that it could be neuroblastoma, but they still weren’t 100% sure. They thought it was neuroblastoma due to the mass in her chest and her urine tests. Lily started chemotherapy that day.

She reacted badly to the chemotherapy initially and ended up in the high dependency unit for around the clock care. She really wasn’t very well at all. She was also given strong steroids to strengthen her airways and was in hospital for about three weeks.

The medical team gave us the Neuroblastoma UK parents booklet and it was really helpful having a specific, detailed document about Lily’s cancer.

It took a few weeks for Lily’s cancer to be staged. The medical team originally thought she had low-risk neuroblastoma, then they thought it had spread to her lymph nodes. We were told that this could affect her kidney function and even her fertility. Then a few days later we were told that it hadn’t spread and thankfully she wouldn’t need such harsh treatment.

A clinical trial, chemotherapy and thankfully, remission

“Lily was just amazing throughout her treatment. We were lucky that she was at an age where she didn’t really know what was going on. ”

By December 2019, Lily was thankfully in remission.

Lily was put on a clinical trial to see how different levels of chemotherapy drugs would work and the side effects.

Lily needed four cycles of chemotherapy, each cycle was about three days then she’d have three weeks off. She responded well to the first rounds of chemo and we went home on the August bank holiday weekend. We were mostly at home between the chemo, apart from a few admissions for low platelets and a blood transfusion. She also had a temperature spike around Christmas and needed antibiotics.

By December 2019, Lily was thankfully in remission. The doctors showed us the first and last scans side by side, and it was incredible how much the tumour had shrunk in four months. We had to wait another month or so for her central line to be taken out, but she was back to nursery in the New Year!

Lily was just amazing throughout her treatment. We were lucky that she was at an age where she didn’t really know what was going on. The psychological impact of it all was mostly on us, not her. Lily was really cheerful, and just got on with it, she was a dream. It was such a shame that coronavirus hit when it did. We’d just started to see people again and Lily was enjoying swimming, but then lockdown started.  We’re all looking forward to getting back to real life!

Hope for the future

“We can start to hope for the future and put it all behind us...We hope that by sharing our story, we can give other families hope too. ”

Lily and friend Orla, who walked to raise money for Neuroblastoma UK.

Lily’s been in remission for over a year and we can start to hope for the future and put it all behind us. She’s still has scans and tests every 3-4 months and is on steroids as she has a bit of a hormone deficiency, but we’re hoping to come off them soon.

We were so lucky with Lily that we really want to help others in a similar situation. Reading positive stories about children with neuroblastoma really helped us when we first found out Lily had cancer. We hope that by sharing our story, we can give other families hope too.

My whole family took part in the first Sleigh to 5k with us, Martyn ran the 50 mile Chester ultra marathon and Lily’s little friend Orla even walked 26 miles in January with her mummy to raise money too!

We would love to be able to raise more money to fund research into treating this horrible disease so that as many children as possible can have the same positive outcome that Lily has been lucky enough to have.”

Run, walk or cycle to help children like lily

If you’d like to take part in a fundraising challenge like Alex and her family, there are lots of events to choose from. The money you raise can help scientists develop new, more effective and kinder treatment for children like Lily. Thank you.