Exploring further treatment options

The Gentleman family

Flora is an energetic, outdoor-loving four-year-old from East Lothian, Scotland. She loves playing at the beach, splashing in the sea, playing at the park and building puzzles. She is a huge Peppa Pig fan and enjoys playing Peppa games on her tablet.

In January 2021, Flora was diagnosed with autism spectrum disorder. In the months that followed, Flora wasn’t herself and her parents were given the devastating news that, at just two years old, she had high-risk neuroblastoma. Flora is currently enrolled on the bivalent vaccine clinical trial in New York with the aim of keeping her cancer away.

Steph, Flora’s mum, shares her experience of trying to access maintenance treatments for Flora:

“When Flora was initially diagnosed with neuroblastoma, we had absolutely no idea what this diagnosis meant. We felt completely in the dark and helpless. We had never heard the word ‘neuroblastoma’ before and there was something very scary about that concept.

“As the weeks progressed and we started to learn about neuroblastoma, we realised just how devastating and aggressive this cancer can be. It hit us like a ton of bricks. Finding out that your two-year-old daughter has a cancer so aggressive it could kill her throws you into complete turmoil. I couldn’t eat more than a slice of toast a day for weeks because I had a permanent feeling of nausea from the fear that neuroblastoma brought into our lives. I had pounding headaches from the lack of sleep, but I couldn’t convince my mind to switch off from the worry. It was absolute torture.”

Accessing maintenance treatment

"We couldn’t have navigated our way in accessing maintenance treatment without the assistance of Solving Kids’ Cancer UK, and particularly Hayley from the Family Support Team!"

"Between fundraising and caring for a very poorly child, we were very limited in time (and energy) and really relied on the charity’s support in accessing the bivalent vaccine trial in New York. We weren’t left to ponder who to contact and what number to call."

"We were put in direct contact with the team in New York who then arranged our initial consultation with Dr Modak. This took a huge weight off our shoulders and, when things didn’t always go to plan, Solving Kids’ Cancer UK were always there at the other end of the phone to guide us through the hurdles."

Difficult decisions

"When making the decision to access maintenance treatment, we had to consider the fact that Flora is autistic and whether she would be able to tolerate not only further treatment, but also travel.

"It was a really difficult decision to make. There is a lot of planning and preparation that goes on behind the scenes when Flora travels or visits somewhere new. We aren’t able to just hop on a plane or stay at a new hotel without accessing support and providing Flora with the tools she needs to be able to cope with the change. It adds a whole other layer of stress and anxiety to an already complicated situation.

"Ultimately, we decided to push on and enrol her in the vaccine trial as she has shown us just how much of an incredibly strong and resilient little girl she is through her 18 months of frontline treatment. Although incredibly anxious about how we she would cope, we kept the faith that she would!"

Warmth and familiarity

"Before we came into contact with Solving Kids’ Cancer UK, we felt lost and incredibly isolated. To have a friendly face to contact when you’re feeling out of your depth is so crucial. They bring a warmth and sense of familiarity that you desperately crave on those really dark and lonely days.

"It can be really hard finding factual, relevant and current information about neuroblastoma when you’re searching online. You know that, when you’re talking with the charity’s team, you’re being provided with the correct information by a knowledgeable team of passionate people."