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Adrianne Barlow avatar
Adrianne Barlow

Adrianne's Great West Run page

Fundraising for Children’s Brain Tumour Research Centre - University of Nottingham

45 %
£225.00
raised of £500 target
by 18 supporters
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Children’s Brain Tumour Research Centre - University of Nottingham

We undertake critical brain tumour research to improve survival rates across the World.

Charity Registration No. exempt

Story

Thanks for taking the time to visit my JustGiving page.

My fundraising is for the Children's Brain Tumour Research Centre and it has been inspired by a very inspirational family, one little trouper in particular called William.  I first came across Williams 'Make William Well' Facebook page and blog due to a mutual friend and I have been following his courageous journey ever since. 

Having a son roughly at the age William was when he was first diagnosed with a brain tumour (an Anaplastic Ependymoma) I felt attached to William and the campaign his parents were running on his behalf.  Williams’s journey has been a long and difficult one, and it's one that still continues to this day. 

Hilary and Stephen received the utterly devastating news that is
every parent’s worst nightmare William had a Grade 3 Anaplastic Ependymoma, the size of a golf ball, of the Fourth Ventricle. Within days William was taken into surgery and the tumour was removed.

Due to the location of the tumour and its proximity to critical
nerves William was left with partial paralysis to the left hand side of his
face which meant that in addition to not being able to move the side of his face, he had to be tube fed due to not being able to properly swallow.

Although it was removed, the grade of cancer the tumour was found
to be meant that there was a significant chance that it would likely come back so further treatment was required. Within days William started a 13 month course of chemotherapy.


William was not able to sustain his tolerance of this treatment and coupled with the fact that he was found to be deaf in his left side (likely due from the surgery) and began to lose high tone hearing in his right side (likely due to the chemotherapy) the decision was made to stop treatment after 9 months.

After a few weeks Williams had his feeding tube removed and so too
was the central line fitted for administration of the chemotherapy drugs.
William’s hair grew back and he returned to nursery. Unfortunately after
 several clear scans deterioration in William’s balance was
noticed. After speaking to his oncology consultant his next scan was brought forward and the tumour was found to have re-grown.


Due to where the tumour was found this time Williams’s operation
would be more complicated than the first. Having initially been told by the surgeon that he thought half of it had been removed the scan showed that in fact he had removed most of it. Unfortunately William could not be taken off ventilation since his cough had been compromised by the surgery. After a week on heavy sedation in intensive care he had to have a tracheostomy fitted before he could be weaned off the sedation.

Unfortunately William was refused Proton Beam Therapy in America,
due to the travel implications involved with having a tracheostomy, and because the tumour was increasing in size it was decided that William would be treated at City Hospital with a 6 week course of Radiotherapy.
 

In early 2016 the tumour was found to be increasing in size and
despite going through another round of chemotherapy its growth had not stopped. Hilary and Stephen were told that there were no other treatment options available.


It was at this point that Hilary and Stephen decided to seek
treatment options outside of the NHS and came across
CBD and a private clinic which was able to offer a synthetic version of Cannabidiol (CBD– a non-psychoactive element of Cannabis).

Six months after being told there was nothing more that could be
done for William, as opposed to noticing a continuing deterioration,
an improvement in Williams condition was noticed. Once this was suggested to Williams’s clinician the decision was quickly made to carry out a MRI scan whereupon his tumour was found to have shrunk by well over half – pretty much two thirds. Williams’s tumour is now currently stable due to this treatment and the Ketogenic diet that William is following.
 

It is because of this that I am running the Great West Run to raise money for the Cannabidiol Research project that Williams parents are pioneering. The team at the children's brain Tumour Research Centre need 100,000 to enable them to test the drug on Ependynoma calls (Williams type of tumour). As well as being able to better treat William, there are countless numbers of children and adults who could benefit from this research and how amazing would it feel to know you did your little bit in helping this happen.  

This is an extremely short description of what William has encountered
during his short life. I think you can agree that William has been through more than most would do their entire lives. If you want to read a more in-depth account of Williams journey, and also want an updated on how William is doing then please visit
www.makewilliamwell.com. 



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