When our non-verbal son told us he was in pain, we knew something was horribly wrong

No matter how much he ate, the weight continued to fall off him at an unhealthy rate. 

When our non-verbal son told us he was in pain, we knew something was horribly wrong
Anthony and Abi with their sons in a selfie in front of a cathedral
The procedures themselves weren’t autism-friendly (Picture: Anthony and Abi)

We hadn’t heard of Hodgkin Lymphoma before.

So when it was uttered in the same breath as our eldest son’s name, we didn’t know what to say. We knew it was serious but our minds were racing.

Just two weeks prior, we’d been turned away from A&E without any meds. 

Now, after demanding a second opinion, we were being told the worst news imaginable for any parent. Our boy had cancer.

We were heartbroken and terrified. Not just because we knew that there was now one heck of a battle ahead, but because Levi is autistic and this was going to be another challenge for us all to face.

For the first 18 months of his life, Levi seemed to be a typical baby boy. Then he began acting differently to other children.

While his classmates were beginning to recognise words, even string sentences together, Levi seemed to go in the opposite direction.

It was like the words he had learned were systematically vanishing from his brain until, eventually, he was practically non-verbal again.

The nursery staff also thought there might be something wrong with his hearing because of how he reacted to things, but we knew that his hearing was fine – he would turn quickly if he heard music he liked, or if he heard a packet of crisps being opened!

Levi sitting on a bench, looking to camera, wearing a red t-shirt and blue jacket
For the first 18 months of his life, Levi seemed to be a typical baby boy (Picture: Anthony and Abi)

At this point, we suspected he was on the autistic spectrum and would need learning support.

Getting a diagnosis was a gradual process, but it allowed us to adapt to what Levi needed to make life as easy as possible for all of us. We had help from speech and language therapists, and he went to a special school from age three.

Over the years, we all adjusted as Levi grew. He remained non-verbal but we had to try to find ways to communicate with him – that challenge still remains today.

Initially, we realised we needed to ask him things several times, and to change the types of questions we needed to ask – and we started using sign language, and Applied Behaviour Analysis (ABA) too.

If you don’t communicate with him properly, he will say he is OK, but if you can read his expressions closely, he will tell you more. It may be a wince or a look, and you need to explore that to know what he means each time.

He has always been a big lad, and this did make it more difficult to look after him as he got older, especially as he could hurt himself or others.

Then, just before he turned 17, he started pointing to his groin and hip, telling us there was pain.  

Anthony and Abi with both sons, in a park having a picnic
Telling Levi was difficult as he just wanted to go back to school (Picture: Anthony and Abi)

Levi has a high pain threshold, so for him to say this, it was extremely worrying. We had also noticed he was losing weight.

He loved being outdoors and exploring, so at first we hadn’t been concerned, especially as he was still eating his meals. But no matter how much he ate, the weight continued to fall off him at an unhealthy rate. 

We booked appointments with his GP, a paediatrician and then a physiotherapist, who recommended an osteopath.

Our instincts were telling us something wasn’t right, and the osteopath arranged a private MRI scan purely to rule out our worries that it might be something serious. 

However, the scan showed that the blood in Levi’s bone marrow didn’t look right. When the results came through, he had to go straight to hospital for further tests.

At A&E, his blood count was low, but he was still discharged without any meds.

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Confused, we took Levi home for the weekend but he continued to get worse – he had a high temperature and was clearly in a lot of pain – and we soon returned to our local A&E at Basildon Hospital.   

He had a blood transfusion and further tests. He spent a week there waiting for the results to come back – then, they told us it was cancer.

He was moved to UCLH where a diagnosis of Hodgkin Lymphoma followed.

Telling Levi was difficult as he just wanted to go back to school and we had to tell him in ways he would understand.

We would say ‘Levi is very ill’ – and we could see wheels turning in his head. We needed repetition and reassurance for him, and he would understand. And then we would need to remind him again, as he just wanted to go out.

Levi’s treatment began instantly, though it was anything but straightforward.

He had been taken to UCLH as they were able to treat him as a young adult with special needs, but one of us always made sure to stay in the hospital with him; the lack of routine and the uncertainty was particularly difficult for him to cope with.

The procedures themselves aren’t exactly autism-friendly. We would always be explaining new things and getting him through the next day – for example he had to sit still for scans for about 45 minutes or an hour. If he moved, it would add an extra 20 minutes or so.

We would say ‘Levi is very ill’ – and we could see wheels turning in his head

The steroids he was on had a tendency to make him more aggressive at times and he pulled out his PICC line twice too.

We tried to reassure him as best we could, and tell him what was happening next – but cancer is an unpredictable disease and timings of his treatment might get changed at short notice.

We’d do our best to get him to tell us how he was feeling, to ask him if he was in pain or differentiate between the symptoms, but we also had to watch closely for the side effects. We would even lie with him sometimes just to know if he was shivering.

But the support we received was incredible.

We strongly believe that it was only thanks to the huge team involving the hospital, family and staff from Levi’s school rallying round to help that we managed to get through it.

Levi’s brother, Shomi, has also been amazing. Though he was studying for his GCSE exams, he has never stopped being supportive of his brother. He has since admitted he did keep to himself during Levi’s treatment because he didn’t want to worry us or cause any additional problems.

And despite all of the gruelling treatment and the tough times, Levi remained so positive through it all.

He had down days of course, but on the days that he asked for a hug or for his favourite meal of chicken and chips, we knew he was happy. On those days he would smile.

And when Levi smiles, it’s contagious. 

When Levi finished his treatment – something he was fully aware of thanks to a tracker he had which counted the days – he returned to school a couple of weeks later.

Anthony and Abi with both sons at Levi's birthday, standing in front of his birthday cake at home
Levi’s brother, Shomi, has also been amazing (Picture: Anthony and Abi)

And earlier this year, Levi was told he was in remission, which was an immense relief. We’re so thankful to have come through it all.

He now has checks every three months but that doesn’t slow him down. He is back enjoying his walks again now, and he knows he is better as he has energy to spare.

But while some of the challenges he faced during his treatment are unique, some of the things we dealt with will be familiar to other families living with cancer. 

It’s not always easy for children and teenagers to communicate how they’re feeling, especially for people with autism. This is why it’s so important that doctors and nurses ask the right questions, in the right way.

They have to take the time to learn their patients’ tell-tale signs, like Levi with his looks, and ask them how they are doing to get the real answers. 

Everyone affected by cancer needs to be listened to, no matter how hard it is for them to communicate. 

Our experience has reinforced that we should always put our foot down when we have concerns. We will always insist on checks and care for our son, and others like him – it’s crucial for saving lives.

Anthony and Abi are raising awareness of the Cancer Research UK for Children & Young People Star Awards. Run in partnership with TK Maxx, the Star Awards celebrate the courage of children who have been diagnosed with cancer. For more details and how to nominate, visit: cruk.org/starawards

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