We’re delighted to be able to announce that Make William Well has become a Supporter Group of The Brain Tumour Charity
Becoming a Supporter Group means that we can raise money for a cause we believe in without having to register as a charity – The Brain Tumour Charity has agreed to ringfence 100% of any money we raise though our donations page for use on research we want them to spend it on
Things have come a long way since we first proposed carrying research into cannabinoids over two years ago and we are extremely grateful to the Children’s Brain Tumour Research Centre for agreeing to write the cannabidiol research proposal which we pushed so hard for and helped raise funding and awareness to make happen
Our hope now is that this research can be built upon such that parents aren’t having to spend thousands of pounds and in some cases break the law on something that, provided it is found to be effective, should be available on NHS prescription
Please visit our Brain Tumour Charity webpage (which contains links to other useful pages on their website) and consider making at donation by clicking here
Also, watch this space for a couple of exciting developments we’ve got in the pipeline…
When many people hear the words “medicinal cannabis” they automatically associate the term with phrases like “backdoor legalization for recreational use” and assume it has no actual medicinal value…
Having been thrust into the world of medicinal cannabis I came across not only anecdotal stories of people being effectively treated with various cannabinoids (compounds found within the cannabis plant), but numerous academic studies on how they can be effective on various conditions, as well as cannabis based products made by large pharmaceutical companies…
I also came across suggestions as to why the US criminalised cannabis in the early 1900’s and used scare stories to vilify its use in order to save the jobs of those working for what is now called the Drug Enforcement Agency (DEA). I read these stories with a high degree of scepticism, whilst at the same time believing things like ‘there is no doubt that cannabis causes schizophrenia’…
The more I read, though, the more the “conspiracy stories” about the covering up of the value of medicinal cannabis started to make sense. I learned more about cannabis and how different cannabinoids can have different effects on different disorders – how some, for example CBD can actually counteract the psychoactive effects of THC, another cannabinoid.
Given this I read with great interest an article by a professor of neuropsychopharmacology and psychiatrist at Imperial College London, David Nutt, particularly since it was published in such a prestigious medical journal – the British Medical Journal (BMJ), which in just three pages gives validity to many of the conclusions I’d come to.
My reason for writing this blog post is to persuade people to see through the illegalities to the medical possibilities of cannabis in the hope that misinformed biases can be overcome and much needed research into cannabinoids and childhood brain tumours can be carried out.
Nice to see the wee man feature in an advert for a family event organised by The Brain Tumour Charity.
The picture was taken at the Family Day Helicopter Ride event we attended last year and we were recently sent some other pictures taken on the day…
William is doing well at the moment. So far so good with the chemo and other approaches. Fingers crossed the results of his tumour analysis will come back soon with some positive news on other approaches we could consider.
Hope soon to be able to announce exciting news about research/ fundraising. Please get in touch if you’ll be taking part in an event you could use to help us raise money – if not you could always take part in our Hadrian’s Wall Challenge, now re-scheduled for August!
It might not come as a surprise to those who keep up to date with our blog but we’ve decided to put the Hadrian’s Wall Challenge back to the second bank holiday in August.
Is going to be an interesting period for me personally since I also managed to secure a place in the Great North Run which is a couple of weeks later!
The timing does, however, mean that we’ve got more time to find something worthwhile to raise money for – less than three months left ’till the end of the CBD Research Project… fingers crossed there’ll be something off the back of that we can support.
If you’re interested in taking part, please visit our Facebook Event Page and/or message me and I’ll send you a link to the WhatsApp group we’ve started.
Turns out there was some tumour left after the surgery so the risk of radiotherapy, given that he’s already had it previously…
Anyway, we’ve now started metronomic chemotherapy which is low dosage hence has less risk of toxicity.
Still continuing our other approaches which our consultant says will be fine when given alongside the conventional treatments…
Hopeful noises coming out of Nottingham in relation to cannabidiol research – hope to be able to report something soon, perhaps some more research people can help make happen soon…
In the meantime we’re continuing to make precious memories – wee man loves planting seeds – here’s hoping my amateur gardening advice will bear fruit…
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.