Two tonnes of snow brought to Surrey for four-year-old ‘Billy the Brave’ living with rare brain tumour

The parents of a little boy living with a rare type of cancer are blown away by the kindness their family has received. Billy Thompson, dubbed “Billy the Brave”, is a four year old boy living with a rare type of brain tumour,[1] which was given heartbreaking prognosis by doctors. A local businessman followed Billy’s story on Instagram[2], and kindly offered to organise a snow day for Billy[3], and his big sister, Maddie, six.

Around two tonnes of snow was brought down from the Midlands Snow Dome to Bookham, where Ellie and Jamie Thompson live with their two children on Wednesday, December 20. “Billy has been asking to see the snow,” Jamie said, “He was just in shock when he saw all the snow in the garden, there was a lot of shrill noises and laughter coming from the children as they played in the snow.” Billy loved playing in the snow and meeting Santa with his sister and cousins (Image: Thompson family)

Luke Hultquist treated Billy to the snow day, and even managed to organise a visit from Santa himself on a sleigh pulled by real reindeer.

The family set up a snow machine on the roof of their house, and let the children play in the snow. Since his tumour was found on November 7, after painful headaches and tummy aches, Billy is being treated at the Royal Marsden[4] and has undergone 13 rounds of radiotherapy and has also been taking steroids. The rare cancer, a diffuse intrinsic pontine glioma (DIPG), the tumour[5] affects 20 to 30 children a year.

Santa even came to visit, bringing his reindeer, who the children got to pat (Image: Thompson family)

Despite feeling up and down, Billy loved playing in the snow and meeting Santa with his sister and cousins.

Jamie said: “It was very special, Billy has been asking to see snow for a long time and he talks about it quite a lot, and for it to come from the Midlands was crazy it was just very special. “With the snow, and Billy being cheered on by Brian May in a video[6], we are always blown away by what people do and we are so appreciative.” To celebrate Christmas[7], Billy and Maddie’s grandparents are coming to visit and the family will have a big Christmas lunch, and are looking forward to relaxing and spending time together.

Then on New Year’s Day, Jamie and Ellie are taking their children on holiday to Dubai for a week.

Billy poses with his mum, Ellie, during the snow day, where snow and foam was sprayed across the garden (Image: Thompson family)

The family were hoping to take Billy away, as he hasn’t had a proper holiday due to being born just before the pandemic hit. While in Dubai, they will take Billy and Maddie to a big water park, where they can make lots of memories. To support the Thompson’s, visit the JustGiving page[8].

Previously called DIPGs, diffuse midline gliomas are the second most common type of primary high grade brain tumour in children. They are a type of glioma and grow in the midline between the two halves of the brain.

• problems with walking, coordination or balance
• weakness and fatigue in the arms and legs
• difficulty controlling facial expressions or one side of the face appearing different from the other
• speech difficulties
• problems with swallowing and chewing
• double vision or difficulty controlling eye movement
• headaches
• fatigue
• nausea and stomach aches

Treatments currently include radiation and steroids, and in some cases, chemotherapy. If you have been impacted by this story, you can find more information and support here[9].

His parents previously spoke to SureyLive about his diagnosis. Parents Ellie and Jamie Thompson noticed a rapid change in their little boy’s behaviour just after he started school. But at first it was put down to stress and food intolerances, such as a lactose intolerance, following several trips to the GP.

When Billy began falling over and complaining his legs were hurting, they rushed him to A&E, where dad Jamie suspected Billy might have had a brain tumour. It wasn’t until November 7 when the trip to A&E[10] revealed the parent’s worst fears to be true: a mass was found on Billy’s brain.

Billy Thompson, four, has been diagnosed with an inoperable tumour (Image: Ellie and Jamie Thompson)

Billy was rushed in an ambulance to St George’s hospital, and an MRI confirmed the little boy has an inoperable terminal tumour on his brain stem. Jamie said: “The doctor kept saying: ‘I’m so sorry’.

I broke down in tears and they put us in a separate cubicle,” and Ellie added: “[The doctor] was crying, he had a kid the same age, they don’t see a lot of these cases. He said the prognosis was dismal. “The bottom just fell out my world and I didn’t know what they wanted me to do next.

We have been told that radiotherapy might buy us some more time with Billy, if we are lucky.”# Unsure of why he has to go to hospital for scans and tests, Billy is finding the sudden change of his everyday life confusing and difficult. Ellie said: “With his symptoms and anxiety mixed in, he doesn’t want to go anywhere.

He’s been asking us: ‘When am I going to get better?’ He even asked us a question about heaven the other day, and we don’t know why he said that.” A recent successful biopsy could open up opportunities for clinical trials. Trials in the UK are limited to one child at a time, and the biopsy has to be a perfect match to make each applicant eligible.

Get more news from SurreyLive straight to your inbox for free here.[11]

References

1. ^ a four year old boy living with a rare type of brain tumour, (www.getsurrey.co.uk)
2. ^ Instagram (www.instagram.com)
3. ^ Billy (www.getsurrey.co.uk)
4. ^ Marsden (www.getsurrey.co.uk)
5. ^ tumour (www.getsurrey.co.uk)
6. ^ video (www.getsurrey.co.uk)
7. ^ Christmas (www.getsurrey.co.uk)
8. ^ page (www.justgiving.com)
9. ^ here (www.thebraintumourcharity.org)
10. ^ A&E (www.getsurrey.co.uk)
11. ^ here. (www.getsurrey.co.uk)