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

by Anthony Adekunle , Tom Bourton | Personal stories

7 September 2023

5 comments 5 comments

Levi and his family enjoying a holiday
Levi (far right) was diagnosed with Hodgkin Lymphoma when he was 17.

In 2022, Levi was diagnosed with Hodgkin lymphoma, aged 17. It was a shock to his family, who had never expected his symptoms to be cancer, and it was the latest in a long line of challenges for Levi.  

For Childhood Cancer Awareness Month, here is Levi’s dad Anthony’s account of his family’s experience, as told to Tom Bourton in our Media Volunteer Liaison team. 

Levi has some unique circumstances. He is autistic and non-verbal, with severe learning difficulties. He also has a very high pain threshold, is very strong and has had a history of self-harm, such as banging his head and hitting himself.  

Levi can communicate, but in his own way. He uses sign language, but it can be quite personal to him: you need to be familiar with his sign language to know what he’s saying.  

And, as he can’t give much verbal feedback, Levi needs to be checked on regularly. You have to understand how to ask the right questions to find out what you need to know. He’s not just going to tell you, and a question like “Are you okay?” would probably lead to a yes – but you don’t know if he’s answering about his pain or saying whether he’s had a nice day. A question like “Is Levi in pain?” would be better. 

Before he was diagnosed with cancer, Levi’s symptoms were massive unexplained weight loss and pain in his groin and hip area. He would say, “Pain, pain, pain”.

He didn’t look healthy to us, and I think this is an important point. What looks right to a parent is vital: you know them better than the doctor does.

We know that Levi doesn’t react to everyday pain. So if he winces, it must be serious. And if he speaks like that, he needs to be heard. He had this pain in the groin and hip for over a year. We saw a paediatrician and a GP about it, but we didn’t think they realised how unusual this was. We wanted to get it checked out further.  

We got an MRI scan, which showed that the blood in Levi’s bones didn’t look right. The doctor asked if he had sickle cell disease, which we knew he did not, then suggested doing blood tests.  

He was due to go back to school the next day, so we took him back there and they did those tests nearer to his school. Our doctor got the results and said he should go to hospital right away. He went to A&E nearby, and they saw his blood count was low, but he was discharged.  

We brought him home, and we were still concerned. He didn’t look healthy to us, and I think this is an important point. What looks right to a parent is vital: you know them better than the doctor does. He had a high temperature and more pain which didn’t subside, so we took him to A&E locally in Basildon, Essex.  

The doctors there did more tests and said he needed a blood transfusion. They suspected leukaemia and he was in for a week. He was moved to University College London Hospital, where we got the full diagnosis of Hodgkin lymphoma and he started chemotherapy. 

We would try to be as clear as we could about what needed to happen, but it's always hard to give certainty with hospital time.

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. 

Levi, who was diagnosed with Hodgkin Lymphoma when he was 17.
Levi now goes to a residential school that can offer him 24 hour support.

I think people have to be so careful about asking children and teenagers the right questions, especially with autism. At Levi’s age, consent was also an issue – he needed to know what was happening and why.  

Teenagers can find it hard to articulate what they’re feeling, too. Levi can have a short fuse, which is pretty normal – all teenagers can have mood swings, but the side-effects of the chemotherapy and other medication didn’t help. And we know that when Levi is anxious, he might not sleep, which will have a knock-on effect the next day, when everyone is sleep-deprived and cranky. 

One of us was always with Levi in hospital in case of any issues. He really wanted to know how long things could take and when he could get back to his school and his friends. We would try to be as clear as we could about what needed to happen, but it’s always hard to give certainty with hospital time. We would constantly repeat and re-affirm what was happening next, but always be adjusting.  

That tied in with some things we had already been doing. Routines are important to Levi, but we have tried to vary these slightly over time, as we know that Levi will face change in his life and we need to prepare him for it.  

For example, to help Levi get used to a bit of difference, we’ve made slight changes to timings and moved the furniture around a little. It means he doesn’t become too set. And this stood us in good stead when it came to cancer, with the treatment and all these changes that we couldn’t control. 

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.

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.  

Levi's family when he was younger
Levi and his brother Shomi (far right) have a very close relationship.

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.

Find out more about our research into teenage and young adult cancers.

    Comments

  • Kanwal Haq
    22 December 2023

    We are just going through a similar journey with my 15 year old non verbal autistic child. He was diagnosed with hodgkin lymphoma in march. I have been trying to search someone in our shoes just to be able to have a chat about this journey. Please can Levis parents contact me?

  • Nkiruka Eluwah
    14 September 2023

    I find this story intriguing as it shows what we can achieve if we work together. I am happy for Levi and his family. May God continue to strengthen you in all that you do.

  • Mrs Temitope Alaka
    13 September 2023

    So moved by the courage of your family and the bravery of Levi through his experience of cancer despite all you already had to live with daily with Levi’s needs. May the season ahead be cancer free and peaceful for the family.

  • Maryam
    11 September 2023

    Levi and you all, his wonderful and supportive family, are in my thoughts and prayers.
    Thank you for sharing your story with us. Your vulnerability is amazing.

    May you continue to find strength and motivation in doing the best you can do as parents, for Levi and Shomi.

  • Toby Tragen
    11 September 2023

    So glad Levi made it through !

    Comments

  • Kanwal Haq
    22 December 2023

    We are just going through a similar journey with my 15 year old non verbal autistic child. He was diagnosed with hodgkin lymphoma in march. I have been trying to search someone in our shoes just to be able to have a chat about this journey. Please can Levis parents contact me?

  • Nkiruka Eluwah
    14 September 2023

    I find this story intriguing as it shows what we can achieve if we work together. I am happy for Levi and his family. May God continue to strengthen you in all that you do.

  • Mrs Temitope Alaka
    13 September 2023

    So moved by the courage of your family and the bravery of Levi through his experience of cancer despite all you already had to live with daily with Levi’s needs. May the season ahead be cancer free and peaceful for the family.

  • Maryam
    11 September 2023

    Levi and you all, his wonderful and supportive family, are in my thoughts and prayers.
    Thank you for sharing your story with us. Your vulnerability is amazing.

    May you continue to find strength and motivation in doing the best you can do as parents, for Levi and Shomi.

  • Toby Tragen
    11 September 2023

    So glad Levi made it through !