Lewis' acute lymphoblastic leukaemia story

Lewis is currently in remission from acute lymphoblastic leukaemia (ALL). His mum, Kerri, tells us his story, and how they’re looking forward to life getting back to normal:

It started with tonsillitis

Lewis had tonsillitis in January 2013 and didn’t really recover from it. He always seemed tired and didn’t have much energy. I have two daughters as well as Lewis and they had both had a virus – so we just thought he had picked up what they had.

A few weeks later though, he found a lump in his neck which a dentist thought was a tooth abscess or mouth infection. But he didn’t recover from that either.

Lewis had less and less energy

Gradually he was getting more tired and ill and had less and less energy. A neighbour took Lewis to school one day, but then brought him home. He was too tired and couldn’t even walk.

I took him straight for an emergency appointment at the doctors. The doctor thought he was anaemic so sent us to the hospital for some tests. After the doctor’s comment about anaemia we weren’t expecting anything other than that being the outcome.

But when the consultant said that the whole family needed to come in for the results, I knew straight away it wasn’t good news.

The diagnosis

The consultants took us into a room and told us that Lewis had leukaemia. It was a huge shock to the system and really hard to understand.

Before we knew it he was on antibiotics and taken to The Royal Marsden for a lumbar puncture. He started chemotherapy treatment just a couple of days later.

Coping as a family and with the help of friends

With two younger daughters to take care of it was a big strain on the family and our whole life. Lewis was an inpatient for seven months, so one of us needed to be with him, and the other needed to look after our two little girls.

My husband had to quit his job to be there for the girls and Lewis. It was a very difficult time. Fortunately, the community rallied round and was invaluable during the whole experience. Neighbours helped out whenever we needed it – and even helped us move out of our flat.

Lewis was wheelchair-bound because of the treatment’s side effects and we weren’t able to carry him up the stairs. Without this help from our friends and family we just wouldn’t have got through it.

Lewis smiles, standing with his siblings.

No school for a year

Lewis missed a whole year of school while going through treatment. You wouldn’t know it if you saw him in classes now. He progressed to Year 5 along with his friends, and is even helping out the other kids in his class!

His favourite subject is maths – all that time practicing sums with his dad when he was off school definitely paid off.

In remission and looking forward to 2016

Thankfully Lewis is in remission now, but there’s still a long way to go. He has a lot of side effects from the treatment which are frustrating.

His liver function is unpredictable so sometimes he gets jaundice. He gets very tired after playing football. We’re looking ahead to getting life back to normal, and in particular to July 2016 when monitoring ends.

Update: April 2017

Lewis finished treatment last July and is eight months chemo free. He has check ups every six weeks and all has been well. He has a few side effects as he had chemo and steroids for three and a half years. His bones are quite weak and also still gets tired and achy legs. His is slowly getting back to normality playing back out with his friends on his bike.

(April 2017)

Update: April 2020

Lewis has now beaten cancer for the second time.

He relapsed in October 2017, with ALL. It came back in a rare form as a lump in his sinus that grew and grew. It was misdiagnosed at first as a calcified lump, but after a lot of back and forth, he was given a biopsy and on Friday 13th October 2017, we received the news that he had relapsed after 16 months in the clear.

He completed another two years and two months of treatment and is doing really well.

It’s been a tough journey and on top of the chemo, he’s overcome sepsis and two line infections. He got gallstones during treatment and so has had a tough time on his relapse protocol. He’s struggled a lot with his mobility, but is getting a lot stronger and is now four months off treatment.

boy holding certificate standing underneath end of treatment bell

How you can help

If you’ve been touched by Lewis’ journey, help us invest in the high quality research that really matters which would otherwise go unfunded.

This helps to support children with cancer so they can be with their families for longer.

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