“What’s happening to make treatments better and less horrible?”– Alyssa’s story

Ten-year-old Alyssa Davies from Preston loves art, Harry Potter, riding her bike with friends and playing with her eight-year-old sister Lauren. Here, she and her mum, Angela, talk about her cancer diagnosis and coming to London for a day to visit a Cancer Research UK lab.

On March 17^th 2014, Alyssa was diagnosed with acute lymphoblastic leukaemia (ALL).

“It was such a shock,” remembers Angela. “Alyssa had been feeling unwell and tired for a while, but we didn’t think it was anything serious. At one point we thought she had the mumps but that was it.

“When I heard the news, I remember thinking ‘we’re going to lose her’”.

The pros and cons of treatment

Alyssa was transferred to the Royal Manchester Children’s Hospital for treatment. Over the next six months, she had five cycles of chemotherapy, a lumbar puncture and was given steroids.

Alyssa and her family.

According to Angela, the steroid were the ‘worst part of treatment’ because they made Alyssa really moody.

Alyssa remembers them not being particularly nice as well.

“They made me go a bit loopy!” she recalls. “They tasted horrible, and they made me grumpy and hungry.”

So hungry that Angela remembers one day, Alyssa ate spaghetti bolognaise for breakfast. And another day she ate eight Yorkshire puddings.

“Some foods I liked before treatment tasted horrible during it so I didn’t eat those.”

As hard as it was, the family knew that Alyssa had to have these treatments – side effects and all.

As part of her treatment Alyssa joined the UKALL 2011 clinical trial which is being carried out at different hospitals across the UK.

“I’m pleased she got to join the trial,’ says Angela. ‘And I’m especially pleased she didn’t have to have steroids as part of it.”

The good news is that these treatments worked. Today, Alyssa is doing well. She’s back at school, having fun with her friends and is thinking about the future.

In 2015, she was given a Cancer Research UK Star Award to celebrate the strength she showed when she was diagnosed with cancer. As part of this, Alyssa joined other Star Award winners at Downing Street, where they also launched the Cancer Research UK Kids & Teens campaign.

“It was such a fun day,” remembers Alyssa. “I got to meet Donna Air, Sara Cox and Rochelle Humes from the Saturdays! My sister Lauren got to come to the party too – it was so much fun.”

A grand day out

People affected by cancer drive everything Cancer Research UK does. By sharing their experiences with us, they give vital insights that help us develop our work and ensure we continue to make progress and beat cancer sooner.

That’s why in February, we invited Alyssa and her family to London to show them around one of our labs, and to hear what they think we need to do to improve treatment and survival for children and young people affected by cancer.

Alyssa and Lauren’s parents surprised them with tickets to Matilda the musical.

While there, Alyssa met Dr Áine McCarthy from the Cancer Research UK science communications team to talk about the work we’re doing in this area right now.

“We came down to London on the train the day before we went to visit the lab”, explains Alyssa.

“Lauren and I were so excited – we hadn’t been to London in ages.”

What the girls didn’t know was that the fun was just beginning. Their parents had bought tickets for the whole family to see Matilda the musical.

“When we told the girls they were over the moon,” explains Angela. “They were just so excited.”

The next morning, after what Alyssa describes as a ‘brilliant night’, it was time to meet Áine and visit the lab.

They went to one of the teaching labs at Barts Cancer Institute, the Cancer Research UK centre where Áine did her PhD, and had a look at some of the equipment scientists use to study cancer.

According to Alyssa, there were ‘some really cool things’ in the lab.

“Me and Lauren had loads of fun looking at all the different stuff in there.

“My favourite thing was the microscope – we used it to look at some cells up close. It made them look huge!”

After having some fun in the lab, it was time for Alyssa to chat to Áine.

“One of the things I really wanted to know was what’s happening to make treatments better and less horrible,” says Alyssa.

“I didn’t like any of my treatment but some parts were worse than others – sometimes it tasted really horrible. When I talked to Áine she told me that there are scientists are trying to change things so that treatment isn’t as bad anymore.”

Áine also talked to Alyssa about the work of Professor Pam Kearns, who is Director of the Cancer Research UK Clinical Trials Unit at the University of Birmingham. Along with her team, Kearns is working to understand why sometimes leukaemia treatment works, and sometimes it doesn’t. If they can figure this out, it could help to make sure each patient gets the right treatment for them, and help scientists develop new treatments too.

Looking to the future

Alyssa’s teddy Carys loved visiting the lab too.

Alyssa and her family believe this, along with all of the other work Cancer Research UK is doing to improve survival for children and young people with cancer is really important.

When Áine asked Alyssa if she thinks the work Cancer Research UK supports is important, her response was, “Yes, because then you can help other people differently and faster.”

In the future, Alyssa herself could be involved in carrying out some of this research.

“When I grow up I want to be a nurse so that I can help other children. I hope that by then, things will be different for children with cancer. And that they won’t have treatment that tastes so yucky.”