Ethan was at school on Wednesday 2nd of October when he started suffering from slurred speech and minor headaches, he texted me to book an appointment with the local GP to observe these abnormalities and see what could be done, we were admitted to Frimley hospital for a CT scan and were to await the results the following week..... They didn't take that long, a phone call on Thursday evening from the neurologist had confirmed a 4cm brain tumour on his right frontal lobe.
After receiving that phone call and hearing the diagnosis we were completely devastated which left us, his younger brother and sister heartbroken. Initially it was believed that the tumour could be removed completely and his first operation was deemed a success. Unfortunately on scanning post operation a secondary tumour site remained and Ethan was left with having further surgery. We can’t even begin to describe that day and how our world fell apart and that we knew our lives would never be the same.
After the second craniotomy, the GOLD standard of care followed with 6 solid weeks of travelling to London UCLH for radiotherapy and then a further 9 months of chemotherapy which finished in October 2020, not once did he complain of the treatment and stood strong in the face of this awful disease. As a side effect of the surgery Ethan developed epilepsy in December 2019 which changed his day to day life forever.
Throughout this Ethan has just been amazing and has left us feeling humble and proud of how he has taken on this life challenge. His attitude to treatment and trying to continue living life to the full has just amazed us all on top of a rubbish Covid year. His daily routine of taking 26 tablets split over morning and night has regimented his day with an alarm at 8am, 2pm and 6pm to take a mix of vitamins, chemo, repurposed and prescribed seizure medication all this to give our son a a quality of life.
In November 2020 his seizures were becoming daily which we thought were just an imbalance of his seizure medication, we were about to be hit again with more devastating news as his follow up scan has now shown a reoccurrence of the tumour. We are beyond devastated, heartbroken but determined not to give up. We are now facing the reality that we have reached the boundaries of treatment options in the U.K. and need to seek help with immunotherapy treatment abroad to give him the best chance in life.
Our research has taken us to Cologne where the best new treatments are happening, the one we are looking into is DCVax which is still in experimental phase but seems the most promising. The cost for this initial treatment is amounting to £150,000 which is way out of our budget and hence we need to start fund raising.
Anyone who knows us, knows we ask very little from others but feel we have no option but to ask for help. We have many friends and family trying to organise fundraising ideas which is difficult during covid. We would love for you to get involved via FB https://www.facebook.com/anewhopeforethan/
Those Starwars fans would have already noticed the strap line 'A New Hope', we felt it sat well not just for the intent of the raising of money but also his love for the films. Ethan would love to see the photos of support and please donate as much or as little as you can to help us save Ethan and get him the treatment he deserves. We are eternally grateful xx
I will be updating this page regularly with various fund raising activities coming soon. Below are just a few that will be happening.
100k in 24hrs
STBGFC fund raiser
Whats soul destroying is the mere percentage of funds given to brain tumour research, receiving just over 2% of the total cancer research spend, despite the fact they kill more children and adults under the age of 40 than lung, breast, Leukaemia and colorectal cancers. This is just a stark reminder that so much needs to be done as research into brain tumours is still underfunded and needs to catch up with the amounts dedicated to other cancers.
- Chris Alexander
- Carly Smith
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