“Cancer was another complex issue for our family” – Levi’s story

Cancer felt like it was another complex issue on top of all the other complexities we had faced as a family.  

When he was younger, Levi lived at home and went to a special school, but in 2016 we had to make the difficult decision to move him to a residential school that offered 24/7 support. He needed more help, and so did we. It was an incredibly tough time for us all, including Levi’s brother Shomi, and we were in tears taking Levi to the school for the first time.  

Looking back now, we hadn’t fully realised how much we were all being affected because we were so focused on Levi – it was exhausting. Even though we struggled with him being away, it was definitely the best thing for him. The school gives Levi the support he needs during term and it’s a respite for us that means we can be together on weekends and in the holidays. 

Levi’s combination of challenges may be unique, but we’ve faced issues others might recognise. Some things are difficult for all families facing cancer. 

Still, during those months, everything needed to be a team effort. We have had incredible support, from so many people. 

The hospitals at Basildon and UCL have been brilliant, and the school has been amazing. That’s especially thanks to one of the staff, who was his tutor and carer. She was moving to London to study, which meant she was able to continue to help.  

She was invaluable: attending meetings, taking meticulous notes and being able to give a more objective, professional perspective than we could have as parents sometimes. She also helped the nurses communicate with Levi. We’re so thankful to her.  

The treatment was not easy, and there have been many tears. We needed the team of family, school and hospital working together. Through it all, Levi stayed positive, which helped lift everyone’s spirits. He was given the all-clear in February and is now back at school. 

Levi’s brother has been amazing. Shomi loves Levi to bits and he’s involved when we’re making our plans. He needs to feel loved too.  

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.