As bad as things have been, we are thankful to have come through it. We want to talk about the importance of listening to everyone affected by cancer, no matter how hard it is for them to communicate. That means being aware of people’s concerns, especially concerns raised by autistic and non-verbal patients like Levi.
The danger is not to ask questions, or not to ask in the right way. Listening and getting the answers can take time, but it’s essential.
We’ve learned with Levi that we can’t let ourselves be brushed off if we have concerns. We put our foot down and don’t take any prisoners: we insist on checks and care for him, and others like him.
With the help of his amazing tutor, Levi wrote us all cards at Christmas. I know how much effort they both put into the cards, as writing anything like this takes time and patience.
He gave them to us – to me, his mum and Shomi – and watched our reactions as we read them. He had written about what he thought of us, his concerns about the future, and what we do for him.
We were in tears and he saw the effect of his words – they showed such love and it meant so much to us. He may struggle to verbalise or articulate his thoughts, but there is so much more going on in his head than even we know.
He and Shomi are our boys – we are so proud of them both.
Our work to diagnose cancer in children and young people
Levi’s story is unique, but he’s not the only young person who has had to wait for a diagnosis. Cancer can be especially difficult to diagnose in children and young people. The signs and symptoms are often the same as the signs and symptoms of other illnesses, and they’re usually caused by something else. Finding a better way to tell the difference could be crucial to spotting more cases at an early stage and improving overall survival and long-term quality of life.
With our funding, Dr Julia Hippisley-Cox, a Professor at the University of Oxford, is leading a project exploring new ways to detect children and young people’s cancers earlier.
Using the UK’s largest electronic health database, Dr Hippisley-Cox and her team are comparing the health records of children and young people diagnosed with cancer with data from those that weren’t. From there, with help from sophisticated mathematical models, they’re looking to identify patterns and combinations of issues that could indicate or predict a cancer diagnosis.
The ultimate aim is to use these findings to develop a risk prediction tool that could be used in GP surgeries across the UK to help identify and diagnose cancers in children and young people at an earlier stage, when it may be more likely to be treated successfully.