rocketromano Wed 27-Feb-19 21:02:16

Thanks for doing this Phil. My eldest was diagnosed with low grade brain tumour on his brain stem 4 years ago. He’s had 2 operations due to raised pressure in his brain but they can’t risk surgery at the moment due to its location. We are on ‘watch and wait’ with regular scans. He’s doing pretty well overall but does have a processing disorder due to this and also mild weakness in one leg. We can only hope more treatment breakthroughs happen before he needs any treatment.
Each scan shows a little more growth than the one before. We live our lives as normally as we can as keep hoping he will be ok

oilLovesChuck Tue 26-Feb-19 17:02:31

Message deleted by MNHQ. Previously banned poster. Here's a link to our Talk Guidelines.

eversoslightlytired Mon 25-Feb-19 21:47:56

Good luck.

I am a mum of a 11 year old boy who was diagnosed with a brain tumour on his brain stem in 2016 when he was 8. 99% of it was removed but 1% was left as to continue would have resulted in life altering side effects. As it is he already has been left with pretty life changing effects, with physical effects of right side hemiplegia and cognitive issues of fatigue, word finding difficulties and memory issues, resulting in learning difficulties. The worse part is he is so aware of how he was prior to the brain tumour and the difficulties he now faces.

In 2017 that 1% became active and he had to travel to America for Proton Beam therapy in the hope that it will "put it to sleep". We are now 18 month post proton beam and all scans have been clear but he will have to be scanned throughout his life as it could "wake up" at any time.

The uncertainty is horrendous and the amount of funding that goes to brain tumours is minimal compared to other types of cancer.

I can't do what you are doing but I am baking for the Brain Charity's Big Bandana Bake to raise money

Gooseysgirl Sun 24-Feb-19 21:13:12

Thank you for doing this... my very brave young cousin is living with a brain tumour, and sadly a former pupil of mine died of a brain tumour at just nine years of age. This is a fantastic charity and deserves to be well supported.

dontknowwhattodo80 Sun 24-Feb-19 15:24:10

Well done! I'm a mum of a son who was diagnosed with an inoperable brain tumour aged 5. Now aged 10, he's battled through chemotherapy and lives with the uncertainty of needing more chemo in the future and what else this tumour will throw at him. He's already visually impaired, has Hypophalamic obesity and learning difficulties due to the tumour location and treatment.

It astounds me how little funding goes into the biggest cancer killer in under 40's sad

Tanya2 Sat 23-Feb-19 17:36:13

Well done and Good Luck Phil and all the teams taking on the challenge this year- thank you so much for your support- raising funds and awareness makes a huge positive difference for us families affected by brain tumours and gives us hope that we might be able to fund the research need to defeat this disease

MumsnetGuestPosts (MNHQ) Fri 22-Feb-19 14:33:03

OP’s posts: |


MumsnetGuestPosts (MNHQ) Fri 22-Feb-19 14:00:45

Guest post: “We have come together to support children living with incurable brain tumours”

On 5 March, Phil Spencer and four friends will be taking on the Everest in the Alps challenge, a four day challenge to ski the height of Everest, to raise money for children living with incurable brain tumours.

Phil Spencer

Posted on: Fri 22-Feb-19 14:00:45


Lead photo

"We appreciate how lucky we are but also how delicate life is and how cruel it can be to others who have been less fortunate."

On 5 March I will be undertaking an event of epic proportions. Everest in the Alps is the ultimate winter sports endurance challenge. Together with four friends, as Team BlackLine, we have come together to support children living with incurable brain tumours.

Starting out of Verbier in Switzerland, we will be ski-touring uphill (using skins and ice crampons for grip) over four days, travelling a vertical distance equivalent to the height of Mount Everest (8,848 vertical metres or 5.5 miles). We expect each day to be at least 10 hours of ascent, burning 10,000 calories per day (the equivalent of running three back-to-back marathons each day). We are seeking to raise a mountain of cash for The Brain Tumour Charity.

But the challenge is nothing compared to what people with brain tumours have to face. My personal motivation comes from young Toby Ritchie, my friends' son who has an under-researched paediatric tumour. The more money we raise, the greater chances he and many others like him have of survival.

Here is a short video I made with Toby to try and explain a little more about why I’m doing what I’m doing.

Brain tumours are the single biggest cancer killer of children; globally there are 26,000 kids with low-grade (slower-growing) paediatric brain tumours. There is no cure. Yet, just an estimated 2% of cancer research funding goes into brain tumours and very little is known about the causes, while treatment remains inadequate.

Brain tumours are the single biggest cancer killer of children; globally there are 26,000 kids with low-grade (slower-growing) paediatric brain tumours.

We are looking to change this with our challenge. Sponsorship money raised by us taking part in Everest in the Alps will be specifically used to finance research and new treatments for this type of brain tumour. Through our efforts in the mountains and with kind donations from friends, we are supporting The Brain Tumour Charity in their quest to raise funds for The Everest Centre. This £5 million landmark Centre is the largest single investment in research ever made by The Brain Tumour Charity and its amazing work is supported with money raised by Everest in the Alps. The Centre undertakes ground-breaking research into paediatric low grade tumours.

My team is a group of fathers all from my village in Hampshire, and all with healthy kids. We appreciate how lucky we are but also how delicate life is and how cruel it can be to others who have been less fortunate. Although it's taken me six months of training to get in the right physical shape in order to take on the climb, I’m expecting once we’re in the mountains that it will actually be just as much of a mental challenge to get the right meterage done in order to complete the climb by the end of the fourth day. We will be spending the nights in mountain huts at altitude and, although the scenery will undoubtedly be beautiful, the physicality involved in ski-touring together with the lack of oxygen and the rapidly changing weather patterns of the mountains are sure to take their toll.

It will take a massive dose of teamwork to get this done. This will be our personal Everest. But we're determined to do our best to help Toby, and other children affected by brain tumours.

Should you feel able to sponsor me or simply to get involved spreading the word here are the links: Our website, Twitter, Instagram, The team’s Just Giving.

Thank you

By Phil Spencer

Twitter: @EverestAlps

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