Our Colas Three Peaks Challenge Mascot

Introducing Stuart… our Three Peaks Challenge (which we’re doing this Friday!) Mascot

A huge thank you to all those who have already helped raise almost £3,000 – nearly a third of our target!

For more information on the Challenge please click here and for a bit more background on how the campaign came about please click here

To sponsor one of us and directly fund research into Childhood Brain Tumours, Cannabinoids and the Ketogenic Diet please click here

#MakeWilliamWell #Ependymoma #Cannabinoids #KetogenicDiet #ThreePeaksChallenge

So, this is happening… this Friday…

Ok, so to put things into perspective… on Friday we’ll be walking more than the length of a marathon, almost 25 miles up three mountains, each of which looks like it’s on the horizon when looked at from either of the others… if that’s not worth a fiver in sponsorship then surely what we’re doing it for is…

For more information on the Challenge please click here and for a bit more background on how the campaign came about please click here

To sponsor one of us and directly fund research into Childhood Brain Tumours, Cannabinoids and the Ketogenic Diet, please click here

#MakeWilliamWell #Ependymoma #Cannabinoids #KetogenicDiet #ThreePeaksChallenge

William’s Brain Tumour Journey

Our son William received his cancer diagnosed in early 2014 when he was just 18 months old – it was a high grade brain tumour, the long term survival statistics for which are very poor.

After surgeons first removed the tumour, which was the size of a golf ball…

Post First Surgery Ed

…he underwent 9 months of chemo…

Chemo Eds

…and for a few months we thought he had beaten it…

Inbetween

…until in late 2015 it came back and our lives got turned upside down again.  This time the surgery wasn’t so successful and not only was some of the tumour left on his brain stem, he was left with a tracheostomy and had to be tube fed again.

Second Surgery

He then underwent six weeks of radiotherapy although his tumour had grown back significantly before it could be started…

Radiotherapy

In 2016, after we were told the radiotherapy hadn’t worked, he was given a brief course of chemotherapy before doctors told us there was nothing more they could do for him and he’d have only a few months left to live – he’d not likely see Christmas.

Trachy 3 Ed

At this point we decided to look beyond conventional treatment and decided to start giving him Cannabidiol and put him on a Ketogenic Diet – within a few months William’s tumour shrank by two thirds and a few months later he was able to have his trachy removed

Trachy Removed

Two years later William continues to do well – our doctors were so astounded that they agreed to write a research proposal into Cannabidiol, which we helped fund and which was started early this year.

Although this is a positive first step, much more research needs to be done and the Children’s Brain Tumour Research Centre in Nottingham have agreed to put all money we raise towards researching the approaches we used.

You can help other kids benefit from what William has been through – my current employer, Colas, has very generously agreed to assist in our fundraising efforts and this weekend I’ll be taking part in a company Three Peaks Challenge – please consider sponsoring me by clicking here

#MakeWilliamWell #Ependymoma #Cannabidiol #KetogenicDiet #CBTRC

Savoury & Sweet Treats!

Savoury and sweet treats combined with our dress down Friday helped the office at Colas, Newcastle raise a record total of over £50 this week for the Childhood Brain Tumour Research Centre! Thank you so much to all those two baked, ate, laid and paid! For more information on our fundraising efforts, please click here

#MakeWilliamWell #Ependymoma #Cannabidiol #KetogenicDiet #CBTRC

Big School!

School

3 Years Ago…

I know, I know, not another first day of school photo but occasions like this really do make you think.

Three years ago we were being told to prepare for the worst. It’s only other cancer parents who can truly understand the lows experienced getting to the point of being referred to hospice which we were a year later…

2 Years Ago…

When all else had failed we decided to try Cannabidiol (CBD) and the Ketogenic Diet and his tumour shrank by two thirds and he continues to do well.  All we can hope for now is that a) William continues like he is and b) other kids can benefit from the journey we have been through. You can help directly fund research into what appears to have helped William by clicking here and help make clinical trials into what appears to have helped William happen sooner

1 Year Ago!

No parent wants to deny their kid a chocolate bar when doctors have told them the chances of survival are low and no parents wants to consider using products based on illegal drugs.  Only through getting pre-clinical research carried out into childhood brain tumours can clinical trials be carried out and treatments like CBD and the Diet be offered on the NHS and for kids like William not to have to be mutilated by conventional treatments not even designed for them

Please help William and other kids like him by:

Donating

OK so we know we’ve already asked probably too many times I the past so please (if you haven’t already):

Like our Facebook Page

Share our story

School

Two Bake Sales in One Week!

Ok, so it’s probably not doing much for the waistlines of staff at Colas in Newcastle but this week alone we have taken in £32 from two Bake Sales with the promise of more to come – luckily some of us will be able to burn of those excess calories when we take on the Three Peaks Challenge at the end of the month

A huge thank you to all those bakers and buyers!!

To help towards bringing clinical trials into the Ketogenic Diet and/ or Cannabinoids and their effect on childhood brain tumours forward, please click here and select a page to donate to…

#KetogenicDiet #Cannabis #MakeWilliamWell #CBTRC #Ependymoma #BrainTumour

September is Childhood Cancer Awareness Month

I know it’s not easy but please read…

This month you might notice parents of children with cancer “going gold” for Childhood Cancer Awareness Month…

In the four Septembers since William’s diagnosis I can’t recall seeing a single non-parent sport a gold ribbon on their Facebook profile pic and I’ll admit to never having heard of it before we were told the words no parent wants to hear – your child has cancer

Similarly, I’d never really been aware of such a thing as a childhood cancer – surely it’s an old persons disease… isn’t it? I was well aware of testicular, prostate and breast cancer but not childhood leukaemia and certainly not childhood brain tumours…

Ok so this is partly due to the (thankfully) relatively lower number of childhood cancer cases there are compared to adult ones and the (very false) assumption that treatments for adult cancers can be used as effectively on their childhood equivalents.

However, I don’t think it’s a coincidence that cancers of middle aged wealthy people are better funded than those of young people dependent on their parents.

What I do think is that research into childhood cancer needs much more funding – I’m aware of only three drugs EVER having been developed specifically for childhood cancers – the others used on children are those designed for their adult cancer equivalents…

The point, as I alluded to earlier, is that most childhood cancers are completely different from their adult counterparts and the use of adult treatments is, quite simply, crude and often ineffective.

So, what can be done?

Firstly, please don’t be afraid to acknowledge that kids get cancer.

It’s not contagious and I’m not exaggerating – friends I thought I’d have for life wrote me out of their lives after hearing William had a brain tumour, as if his imminent death would upset their own children or they just couldn’t deal with having to speak to us about him. (I’ve also found out who my true friends are)

Secondly, please support childhood cancer charities.

Ok so you might want yourself covered in case you get cancer when you’re older but hey, there’s already a ton of money going into most cancers you’ll be likely to face in comparison to the fractions of percentages that go towards, for example, childhood brain tumours.

Campaigns like ours urgently need more money for clinical trials to happen sooner – they will happen one day but the longer it takes to fund them the more children like William are going to be mutilated by barbaric conventional therapies not even designed for their type of cancer.

Before I go, please think on this… wouldn’t you want to have more than three drugs available should you hear the words your child has…