William Frost first came to public attention in 2017, when it was reported that medical cannabis had been used to treat the child’s brain tumour. The Extract spoke to his father Steve about the use of CBD oil in helping his son. For anyone unsure of the benefits of using CBD we urge you to read his experience
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The Extract (TE): What age was William when he was diagnosed with a brain tumour?
Steve Frost (SF): “When William was around 18 months old he started getting general sickness and teething which is considered normal for his age. A prolonged period of sickness together with Williams head tilting and other symptoms prompted many visits to the doctor and eventually to the A&E where a week later an MRI scan confirmed our worst fears.”
TE: What were the signs and symptoms William had?
SF: “William's head would tilt, he was off balance and was vomiting. We used a website called headsmart.org.uk which helped us.”
TE: What treatment or medication did he get?
SF: “Within a day or two William had surgery to remove the tumour.”
TE: Were there any side effects from the surgery?
SF: “We cannot know for sure but after the surgery, William had nerve damage which led to partial paralysis on the left-hand side of his body and deafness in his left ear.”
TE: Did William receive chemotherapy?
SF: “Yes immediately after the surgery he underwent chemotherapy in the hospital. It was supposed to last 12 months but William could only endure 9 months as his blood count began to drop.”
TE: Were there any side effects from the chemotherapy?
SF: “Well we do not know for sure but after the chemo, William had a noticeable loss of hearing in his right ear.”
TE: Did this stop the tumour from growing?
SF: “No. About a year after the chemotherapy, in late 2015, we started to notice similar symptoms from before and we found out it was growing again.”
TE: What treatments were taken next?
SF: “Within a week or so of finding out about the tumour regrowth William had more surgery followed by a stay in intensive care. He then had a tracheostomy inserted to help him breathe. Following that, in October 2015 he began a 6-week course in radiotherapy.”
TE: Did radiotherapy work?
SF: “No. Around March 2016 we were informed the tumour had begun to grow again. It was at this point we were desperate and started looking at alternative treatments.”
TE: Did the doctors have any alternative treatments?
SF: “We thought that if there was any other option available that the NHS would have told us. We later found out that the NHS isn’t actually allowed to suggest anything that hasn’t gone through clinical trials.”
“Desperate times call for desperate measures and so we began our search.”
TE: What alternatives did you find?
SF: “We learned about the ketogenic diet that had helped some people with brain tumours and we got some assistance from a UK charity that helped us with advice with regards to what William could and could not have. We also learned about CBD oil.”
TE: Where did you hear about CBD oil?
SF: “Friends of ours told us about CBD oil and we also learned a lot from the documentary ‘Project Storm’.”
TE: Which CBD oil did you use?
SF: “We found a private clinic who were able to give us synthetic CBD oil. It was not the real deal with terpenes etc that we would have liked but at least it was CBD. Back then getting hold of quality CBD oil was very difficult. There were no companies we felt we could trust. It was not in shops and pharmacies like it is today.”
TE: How much CBD oil was William taking?
SF: “William was taking only 5mg of synthetic CBD once a day for 3 days on and then 3 days off. This advice on dosage was based on the doctor’s recommendations that he received from a paper written by researchers at St George's University.”
TE: Was there any improvement in William's condition?
SF: “We were told William’s condition would deteriorate when conventional treatment finished but the opposite happened when we started the ketogenic diet and CBD oil. William was getting more alert, he spent less time spent on the couch, and his walking started to improve.”
TE: What did your local doctor say to this?
SF: “We went to the consultant and he took one look at William and shocked, he ordered an MRI scan straight away.”
TE: What were the results from the MRI scan?
SF: “Incredibly, the tumour had shrunk by more than two thirds in comparison to six months earlier. A paper was written on the results of the synthetic CBD oil.”
TE: Did William still require the tracheostomy?
SF: “No. Thankfully due to William's substantial improvement at around April 2017, William had the tracheostomy removed.”
TE: Was William cured?
SF: “No. Our worst fears returned in late 2018 when it was found out that the tumour had grown slightly and 3 months later it had grown significantly more so.”
TE: What happened next?
SF: “William had to undergo surgery in March of this year, followed by further chemotherapy. Unfortunately, the chemotherapy is not designed for children. The drugs they get are effectively handed down from the adult section. Incredibly only three drugs have ever been developed specifically for childhood cancers and only one for a childhood brain tumour. All the rest are designed for adults.”
TE: Is there funding for children's cancer?
SF: “Only 1% of all the funding available goes to brain tumours, so you can imagine how much goes towards paediatric brain tumours. In light of this, we set up www.makewilliamwell.com to spread awareness of what William has been through and have recently teamed up with “The Brain Tumour Charity” because they are aware of this problem and are working to fund research projects into finding a cure for this disease.”
TE: Have you considered Cannabis oil with THC?
SF: “It is something we would love to do. This is why we proposed and helped fund a £100,000 research project into CBD at Nottingham University in order to get the ball rolling on phytocannabinoid research and attempt to have the laws changed. We want to legally use CBD oil that contains higher levels of THC (most CBD oils contain only trace amounts of THC). We want to know if THC is effective in treating brain tumours because we know from existing research what happens to tumours in cells that are exposed to THC in the laboratory. It’s something we would like to have free access to and that is why we are constantly campaigning to make sure research is ongoing.”
TE: Have you tried full spectrum whole plant CBD?
SF: “We were aware of the limitations of synthetic CBD oil and following advice from a specialist researcher we started using legal full-spectrum CBD oil. The brand was Dragonfly CBD Oil.”
TE: What dosage of DragonFly CBD oil are you using?
SF: “Around 30mg every day.”
TE: Has the tumour grown since using full-spectrum CBD oil and surgery?
SF: “Since the surgery, we have been using the Dragonfly CBD oil and to date thankfully there has been no growth in the tumour.”
TE: How has William been since?
SF: “The chemo has had negative effects on him but we are hopeful with our current approach with full-spectrum CBD oil (alongside the ketogenic diet) as well our optimism that we may be able to use CBD oil with THC and William will get better.”
TE: What is the next step for you?
SF: “We are always working to collect money to fund the brain tumour charity who are funding the research into the pediatric benefits of using phytocannabinoids from the cannabis plant.”
If you are interested in helping William and all those children who are suffering, Steve has arranged a charity fundraiser known as the Hadrians Wall Challenge which commences on the 24th of August.
The link to their fundraising page is The Brain Tumour Charity Supporter Group
*Disclaimer: The views and opinions expressed in any interview featured on our site are those of the interviewee and do not necessarily reflect the opinions & views of The Extract as a whole.
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