Newsletter Signup x

Max's story

Max was diagnosed with acute myeloid leukaemia (AML) in 1993, when he was four years old. Tragically, two years later, Max was diagnosed with a second cancer, alveolar rhabdomyosarcoma. He passed away when he was just eight years old on 22 January 1997. Max’s mum, Gill, shares her story:

Max Lewis with facepaint

A devastating diagnosis

When Max passed away, it affected the whole family. If by sharing our story, we can help to raise money to fund important research, then hopefully we can stop other families going through what we did.

We’d noticed that Max was getting very tired and had a lot of bruises on his legs, but we didn’t really suspect anything.  He’d just started school so we thought he was just worn out from a busy day. Looking back, he also had a little cut on his arm that wasn’t healing, but again, we didn’t think much of it.

He developed a very high temperature on a Friday and we took him to the doctor’s on the Saturday. We were sent home and told to monitor Max – his temperature was over 40 degrees, so we took him to the hospital. They suspected meningitis. The hospital ran more tests, including a lumbar puncture.

We were told it wasn’t meningitis. Relief. It was in fact leukaemia. Devastation.

Max was in hospital for three months

Max was in hospital for three months, as his form of treatment was short and intense. In all that time he only got home for one afternoon. This made it incredibly hard on the whole family. His younger sister Anna was only one year old and she had to live with our best friends, as their dad and I were having to live at the hospital.

After two sessions of chemotherapy Max was still not in remission, but thankfully, Max fought back and he was well for about a year and a half.

Visits to the doctor and a trip to A&E

In September 1995, Max had a fall at school. Quite a while later, I noticed a really dark bruise on his perineum.

We took Max to the GP, and were told it was just a bruise from the fall. Max became increasingly agitated as the swelling continued, causing severe itching as the skin stretched. He was finding it difficult to sleep and sitting on the carpet at school became impossible – something didn’t seem right.

After several more visits to the doctor, my husband and I insisted something more be done. We were sent to A&E at our local hospital.

We saw a paediatrician there, who found a lump in his testicle. Somehow this information was not passed on to another doctor, who told us to go home, for Max to take Piriton for the itching and to sit on ice for the swelling. In disbelief we phoned The Royal Marsden, who organised for Max to see a specialist. From listening carefully to our story and examining Max, he knew something wasn’t right. They took some blood samples.

Diagnosed with a second cancer: alveolar rhabdomyosarcoma

After three weeks of markers, he was diagnosed with alveolar rhabdomyosarcoma, a soft tissue cancer, not a recurrence of AML as everyone had suspected. No one knew whether the second cancer was a result of genetics, the drugs from the AML or just bad luck.

Max started treatment in the January of 1996 with tailor-made drugs and a stem cell transplant. He seemed to respond well.

He finished treatment at the end of August but then in the September, Max started to complain about pains in his legs. We were on holiday in Wales when we noticed the top of one leg was really swollen so we went to the local doctors. Unfortunately they couldn’t refer us to a local hospital, so we made the difficult journey home. We were so scared.

The doctors told us there was nothing more they could do. Nobody could tell us how long he would have left with us – the doctors initially thought just a few days but he carried on fighting for a few weeks.

Max passed away on 22 January 1997, aged eight

We had told Max that he was dying – he was a really bright child, and we felt he would understand. We are a very open family and we didn’t want to hide it from him or his sister Anna, who was five at the time. I struggled with this at the time and still do, but believe in my heart of hearts, it was the right thing to do.

Max was just amazing. He said he was sad but we used humour and positive thinking to get through this difficult time.

Funding research into the causes of childhood cancer is so important. I hope that the work Children with Cancer UK fund may prevent other children from being dealt this cruel double blow of a second cancer.

Newsletter icon

Know someone who might be interested in fundraising?

Email this page to a friend!

Launching Precision Medicine at the House of Commons

On Wednesday 29th March 2017, we launched our ground-breaking Precision Medicine project at the House of Commons. We ...

Read more

Understanding how the leukaemia gene EVI1 affects children with Fanconi anaemia

Fanconi anaemia (FA) is a rare, inherited blood disorder that leads to bone marrow failure. Children with FA ...

Read more

Research Stories – Coral fundraisers visit researchers at UCL Institute of Child Health

We visited some of our grant-holders at the UCL Institute of Child Health last week, taking guests from ...

Read more