Little Evan Fletcher will be spending Christmas at Birmingham Children's Hospital.

He has a large tumour in his abdomen for which surgery is not an option because it has major blood vessels running through it.

Instead, doctors are giving him high dose chemotherapy to try to blast away the bad cells and ultimately leave him with a benign tumour.

But, having just undergone a week of very intense chemotherapy, medics are now expecting the side effects to make Evan's health rapidly deteriorate over Christmas.

So, whilst most people are counting down to December 25, parents Sarah and Craig will be agonisingly watching and waiting as their son's body endures the ravages of chemo.

"He started to have quite a lot of tummy bloating and diarrhea just before his first birthday back in March," said Sarah, from Leamington Spa.

"Having just started to walk, he refused to bear weight and his speech went back to baby babbling.

"He wasn't himself, he'd lost his spark."

Evan pre chemo

Initially, it was thought Evan might have Crohn's as he was dairy intolerant.

But, in July, Sarah and Craig had the worst news parents could ever hear when he was diagnosed with stage four Neuroblastoma - a tumour the size of 'half a football' in his abdomen.

It was so big it was pushing his liver and affecting his adrenaline glands and kidneys.

Evan pre chemo

"We were devastated," said Sarah, 29, who works as a primary mental health care worker and social worker.

"I don't think I could feel as bad and as low as I did, nothing anyone could have done could have made me feel worse.

"It felt surreal. We thought it was Crohn's or celiac, no-one thinks it's going to be cancer.

"And at such a young age - he's barely got to grips with the world.

"I was disappointed surgery was not an option but the consultant is really positive he can get good results."

Evan post chemo

Doctors tried to do a keyhole biopsy but found it was so deep inside his body that they had to open him up to reach it.

The aim is to turn off the bad cells with high dose chemo so Evan is left with a benign tumour.

This will be something he could live with although the treatment is hard-going and there will be lifelong follow-ups on his kidneys and heart.

His hearing was checked too as the treatment can affect that as well.

Evan in hospital

Sadly, further scans showed Evan had a legion in his head too.

However, after Evan had his first round of chemo, the Fletchers were delighted to see an improvement in their son straight away.

"He started trying to do the things he would have been doing before (like walking and talking), it was amazing to see," said Craig, 34, who works as an income and debt recovery manager.

Tests have shown Evan's tumour has started to shrink and the legion in his head has gone.

"He's very strong willed and takes everything in his stride," said Sarah.

"Now, he loves playing all the time. The nurses comment on how well he's doing.

"He's always first in the play room, wanting to explore and climb."

Evan Fletcher with his Mum Sarah and Dad Craig

The family had a break between treatments recently and went on a trip to the Sea Life Centre.

But they knew Evan needed high dose chemo and that it would be tough for them over Christmas.

"We taking each day as it comes and are living with nervous anticipation as we know this next stage is likely to be very nasty.

"His throat, mouth and digestive system may get so sore, he's likely to lose weight and may need to be fed via an NG tube or even through a Hickman line.

"There's likely to be vomiting and diarrhea and he's going to lose the little bit of hair and eyebrows that have come back.

"The nurses are constantly checking his temperature and doing blood tests every day as his immune system is likely to be affected.

"He needs medication for anti sickness and to protect his liver as this type of chemo can cause life threatening liver problems."

Evan with Sarah


The Fletchers have known for a month that they would be in hospital over Christmas.

"It's given us some time to prepare as best we can.

"The hardest thing about having a child who is ill is sometimes you have to do things you have no choice over and that can feel a bit disempowering but you have to do what's best for your child.

"We have our moments but everyone in hospital has been brilliant. We've got to know some of the other families, it's like a little community."

Christmas at Birmingham Children's Hospital

She added: "The staff have made it special for us, with visits from footballers, Santa, a children's choir and the Salvation Army brass band.

"We've been given gift bags and advent calendars and there was a grotto in outpatients.

"It's a nice way to break the day up when we're stuck in a room watching and waiting.

"Our family is coming over on Christmas Day. They've been really supportive throughout."

Staff on the wards will help deliver presents to children on Christmas Day and there will be a Christmas dinner served too.

Sarah and Craig are staying at Ronald McDonald House and taking it in turns to sleep next to Evan.

"It's been great to stay there, especially if one of us is having a really tough night, we can call as it's only over the road rather than all the way out in Leamington."

Evan with his mum Sarah

Evan is likely to be in hospital for four to six weeks, recovering from his chemo, as part of a year long treatment programme, including radiotherapy.

Sadly, even with all this invasive treatment, doctors have said the chances of it recurring are 50/50.

Fewer than 100 children in the UK are diagnosed each year with neuroblastoma, according to Macmillan.

"The consultant says it is good he was diagnosed before he was 18 months old as usually when they see children with metastatic disease like this (cancer that spreads to different parts of the body), it has gone everywhere including their bone marrow.

"Evan has had tests on his bone marrow and it's never been there.

"Every child is different so you never really know how they're going to respond."

Evan and Sarah Fletcher

Evan has had stem cells removed for testing and has had several blood transfusions.

"People have been asking how they can help so Sarah put a post on Facebook asking people to give blood," said Craig.

"A lot of people gave blood as a result.

"You don't necessarily think about blood transfusions when you think about children with cancer but it actually help them to tolerate the treatment and carry on getting better."

Find out how you can help Birmingham Children's Hospital charity here

And find out how to give blood here

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