On Friday William went in to have his tumour removed for the third time in 5 years. Given how it went the second time we were terrified how he’d come out of the surgery. With where the tumour was this time, though, the surgeon was able to go in a different route and it went much better – not only was he confident they’d gotten most of it but William came out with his breathing unaided – he kept telling us to keep quiet as he came around!!!
They weren’t able to do a scan on the day so we had to wait until Monday to find out for sure how it went… The surgeon came to see us later the same day and said the scans confirmed he’d achieved what they call a Gross Total Resection. However, they achieved this 5 years ago during the first operation and with just chemo it still came back.
Next step is to see what radiotherapy (which he couldn’t have the first time since he was under 3) will be available for him – given the fact it’s on the brain stem it will be particularly risky plus since he already had radiotherapy (after the second surgery when they couldn’t get it all out) this presents an additional complication.
In the meantime we’ll work on getting him back on his feet again etc. – he’s already well on the road back to being his usual cheeky self!
You’d have thought that after two years we’d be used to the rollercoaster of emotions that this wicked disease brings with it but the last two weeks have been particularly difficult.
A week last Monday we were told that William’s tumour had pretty much doubled in size over the last two months having been stable for almost two years. Without the research that we have desperately been campaigning and fundraising for we have no clue as to why this could be – perhaps the tumour has finally found a way around the CBD, perhaps it was because we weren’t adjusting the CBD dosage as he was getting older… we just don’t know.
We spent a few days trying to let the news sink in having been told initially that there were a very limited number of experimental treatments that could be available, none of which looked very promising.
To our surprise we were then told at the end of last week that surgery would in fact be an option and yesterday met with the medical team to discuss the procedure. Given how William came out of the last attempt to remove his tumour, we were terrified about the prospect of more surgery. Also, with his type of tumour, he would need to undergo radiotherapy again which, given where the tumour is, brings other significant risks.
The most encouraging thing we learned yesterday was the fact that the surgeon can use a slightly different approach to last time and there is a chance that William might not be as badly affected this time. It wasn’t an easy decision to make but the surgery is set to take place two weeks today.
The Centre for Medicinal Cannabis is a “non-profit organisation working to shape the UK’s new medicinal cannabis regime in the interests of patients”.
Their Blueprint and Recommendations are certainly worth a read.
Every year since William’s diagnosis we’ve organised some kind of sponsored event to raise money for charities we believe can directly help William and other children with brain tumours.
To mark him making it to five years since diagnosis (nope, we can’t believe it either!), we have decided to organise our most ambitious event yet – walking the entire length of Hadrian’s Wall – all 84 miles from the East Coast of England to the West Coast.
It’s still early days organising the event but at the moment we’re looking to do it during the first May Bank Holiday of 2019 so we’ll be starting at Bowness-on-Soloway on the West Coast on Saturday 4th May with a view to finishing at Wallsend on the East Coast on Monday 6th. At the moment we’re planning on camping along the way. At this stage, though, we’re open to suggestion.
It’s a very exciting but uncertain time for research into the area we believe will be of most help to William and kids like him so we haven’t decided exactly where any money raised will go but participants can rest assured that we’ll make sure, by the time it comes to raising money, everything raised will go directly towards the research we believe will help William and kids like him.
If you’re interested in taking part either as an individual or as part of a group, please get in touch. For updates you can follow our Blog, Facebook Page or dedicated Web Page. There’s also a Facebook Event Page.
Just wanted to wish all of William’s supporters a Very Merry Christmas and a Happy New Year.
It has been another rollercoaster of a year for us all and we would like to thank everyone for the many and varied ways in which you have helped, just like in previous years – we are truly humbled.
The photo is from William’s school play – hope you all get what you wanted from Santa!
For anyone who hasn’t followed William’s story closely… after his terminal brain tumour shrank by two thirds having started him on CBD and a Ketogenic Diet, we proposed and helped fund a £100,000 research project at the Children’s Brain Tumour Research Centre into CBD and his tumour type – the project started in early 2018…
Almost 12 months on and the project “show(s) that we can kill tumour cells with CBD whilst the astrocyte population is unchanged”. However, Prof Grundy, who has been leading the research, has cautioned that “these results, though promising are very preliminary and there are a range of increasingly complex studies that need to be conducted to assess whether cannabinoids may have a role in treating children’s brain tumours”.
Despite the cautionary tone, it’s hard to contain our excitement at this latest development, not least because it means that our efforts to date have not been in vain. The next six months of this project will be critical but given these results and current events we are increasingly hopeful that clinical trials into cannabinoids and childhood brain tumours are increasingly imminent.
There’s much more to be done and we’ll be continuing to do all we can to make sure that childhood brain tumours aren’t forgotten as cannabinoids are increasingly being shown to be effective against cancer. Please watch this space for how you can help – in the meantime, please like and share our page and posts so as we can continue to spread awareness.
It’s been a while since I posted much about William himself with all that’s been going on so I thought it’d be nice so share the red carpet experience we had this morning – wee man had been super excited about seeing this over a week before it’s show by the BBC on Christmas Day and it didn’t disappoint – well worth setting your recorder for…