Hadrian’s Wall Challenge 2019

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.

Merry Christmas

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!

CBD Research Project – 12 Month Update

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.

Julia Donaldson’s Zog – BBC Red Carpet Premier

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…

Zog

Make William Well Registered as Official NICE Stakeholder

The National Institute for Health and Care Excellence (NICE) has been asked to carry out a review of cannabis-based products for medicinal use and is in the process of setting up a committee to discuss prescription guidelines.

As someone who has had a very keen interest in cannabis and cancer for two years since William’s tumor reduction (having given him Cannabidiol), I applied for a lay-member position on the NICE committee although, since the draft scope didn’t include cancer treatment as something cannabis-based products could be prescribe for, my application was declined.

This prompted us to apply to have Make William Well registered as a stakeholder in the committee and we’re delighted to be able to announce that, just before the deadline for submitting comments on the draft scope passed, we received confirmation that our application was successful.

The comments we submitted emphasized the importance of having cancer treatment considered by the committee… watch this space… if you have any comments you would like to be put forward to the Committee, please let us know here.

NICE Stakeholder

First Ever UK Paediatric Brain Tumour Symposium

Introduction

I attended this event on Tuesday organised by the charity Brains Trust and found it really interesting.  It was aimed at children and families living with a brain tumour diagnosis, researchers, clinicians and people with a professional interest in brain tumour care.

It was a long day with some really interesting topics covered, from how drugs can be better delivered to brain tumours to promising new therapies to late effects of brain tumours and their impact on education. (click here for a copy of the programme and here for details of the speakers).

Luckily all of the presentations were filmed and posted on YouTube and can be viewed by clicking here so I don’t feel as though I need to cover everything in this blog as I have done for events that I have attended in the past

Instead I’d like to focus in on some of the things I found particularly exciting in some of the presentations.

Drug Delivery

Professor David Walker (Professor of Paediatric Oncology) presented on the challenges of drug delivery and how difficult it is to get the correct amount of a drug to a brain tumour, particularly since it isn’t easy for many drugs to pass through what is know as the blood brain barrier.

One of the approaches David spoke about (there were more in subsequent presentations) was the use of micro-catheters and their use in delivering drugs directly to the tumour although the most exciting thing for me was the prospect of being able to re-visit drugs which had previously been written off due to their inability to cross the blood brain barrier.

Delivering Drugs During Surgery

This presentation was delivered in two sections by Dr Ruman Rahman (an academic assistant professor) and Ms Catherine Vasey (a PhD student).  They both spoke about the exciting procedure of placing drugs within a “container” near to where a tumour was removed during surgery so that the drug could be gradually released at the exact point it’s needed.

Catherine went on to discuss nano-particles and how they could be used to contain drugs and only release them when they enter a cancerous atmosphere.

Electrical Field Therapy

Dr Stuart Smith, a Clinical Associate Professor in Neurosurgery, gave a presentation on electrical fields and how they could be used to disrupt the growth of fast growing cells.  Very exciting but very expensive.

This, in addition to the allure of other promising research that had been presented throughout the morning, prompted me to ask about the availability of such approaches and why our children can’t have access to them now – unfortunately though it was time for lunch and the debate was cut short…

The afternoon session covered some of the practical consequences of having a brain tumour for children from cerebellar mutism syndrome to late effects to the impact on education.

Impact on Education

Louise Robinson, a Neuro Oncology Specialist, working for the charity CLIC Sargent, who supported William whilst we were living in the area gave a really useful presentation on education. She shared some useful links:

A Teachers Guide for Pupils with Brain Tumours

The Brain Tumour Charity – Education Resource

Practical Strategies for the Classroom

Parents Perspectives

A fellow parent of a child with a brain tumour, Pam Wouters, gave a very touching account of her son’s brain tumour journey.  What was really encouraging was hearing another parent speak about the importance of a holistic approach, in particular diet.

It was also humbling to speak to parents who had lost their child but still found the courage to attended the event, many of whom were using their experience to help other children.  I’m not sure I’d have the courage…