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…

The MANY Advantages of Legalising “Last Resort” Medicinal Cannabis for Cancer Treatment

Next Tuesday the deadline for commenting on what conditions medicinal cannabis can be legally prescribed for in the UK will pass (for some reason this fact appears to have gone largely unnoticed).

At the moment the list of conditions includes chronic pain, intractable nausea and vomiting, spasticity and epilepsy but not cancer treatment.  This is because, despite a significant amount of research proving that cannabis compounds can kill cancer cells in the laboratory, there is evidently not as much as for the other conditions to warrant its inclusion (even for use when all else has failed as a last option).

Traditionally, the process of getting to the level of evidence required for the inclusion of a condition typically involves gold standard randomized controlled trials, which cost £millions.

With cancer rates in general continuing to rise and oncologists having to rely on the decades old treatment options of surgery, chemotherapy and radiotherapy for many conditions (only one drug has EVER been developed specifically for a childhood brain tumour), this “gold standard” approach is clearly failing.

Luckily there are those in the scientific community who recognize the limitations of expensive controlled trials and the importance of other approaches such as adaptive clinical trials which evaluate treatments by observing their effects on patients and making changes based on these observations.

I would like to see people being given the option of having medicinal cannabis prescribed to treat their cancer in the first instance although I think at this stage there is something more achievable we should be fighting for – I believe what we currently have is a golden opportunity to advance research into cannabis and cancer

I’m by no means a researcher or scientist but would it be so hard to imagine the benefits of allowing the prescription of medicinal cannabis to patients for whom all other treatments have failed and for this to be done as part of an adaptive clinical trial?

As well as generating much needed clinical research, this would also mean that patients and the parents of children with cancer would have access to medicinal cannabis under the supervision of a doctor as opposed to having to self fund and medicate using drugs of often questionable quality and content.

Finally, who knows, it may end up saving lives…

If you haven’t already, please consider signing our petition to Have Cancer Treatment included in the Medicinal Cannabis Review but hurry, we only have until 4th December.

If you like what you’ve read here please also consider following our Facebook Page.

Argh! What Should We Do…?

After over two years of reading, fundraising and campaigning having championed and helped fund a £100,000 research project and having seeing William’s case featured in an academic article, it’s like being straight back a square one all over again…

It was the feeling of being so helpless that inspired us to do everything we have in the hope that should his tumour start to grow again we’d have some proper answers as to what it was that shrank his tumour in the first place and what we’d be able to do should his tumour return.

However, we’re still non-the-wiser… Should we increase his CBD? Would a different source of CBD be more effective? Do we need to introduce other cannabinoids? What are genuine sources of affordable cannabinoids? ARGH – it feels like we’ve accomplished nothing over the last two plus years…

…which is why the one thing keeping us going at the moment is the prospect that the culmination of months of public awareness and government decisions surrounding medicinal cannabis may result in us having access to a dependable source of the cannabinoids and the prospect that this may lead to clinical trials happening sooner.

That’s why we started this new campaign (different to the childhood cancer petition we started a while ago) and are so passionate for cancer treatment to be discussed as a condition for which medicinal cannabis could be prescribed.  Please sign and share this petition – we only have until 4th December so please don’t put it off.

Argh

#CannaKeto #Cannabis #KetogenicDiet #MakeWilliamWell #Ependymoma

Have Cancer Treatment Included in Medicinal Cannabis Review

We were so excited when the government announced that it would carry out a review into which conditions medicinal cannabis could be prescribed for, especially since the amount of research required for clinical trials to be carried out into cannabis and cancer has clearly already been met – one clinical trial has already been carried out and two more are in the pipeline (which we assumed would surely at least justify it’s consideration in such a review)…

We were subsequently gutted to read that the draft outline for the National Institute for Health and Care Excellence (NICE) committee* (that will advise on medicinal cannabis prescription), proposes discussion of the following:

  • Chronic Pain
  • Intractible Nausea and Vomiting
  • Spasticity
  • Severe Treatment-resistant Epilepsy

AND NOT CANCER TREATMENT

Please sign our petition to have cancer treatment considered by NICE as something that medicinal cannabis should be prescribed for…

We only have until 4th December 2018 for the draft outline to be changed so please sign and share this petition TODAY by clicking here

For more information and updates please follow our Facebook Page

NICE2

*For more information on the committee, including a list of stakeholder organisations, please click here

#CannaKeto #Cannabis #KetogenicDiet #MakeWilliamWell #Ependymoma