This is Liam a funny, cheeky, mischievous 13 year old boy… I may be biased but I am sure that is accurate!
October 2014 Liam was diagnosed with what we thought was a Supercell Pilocytic Astrocytoma brain tumour (a non-cancerous tumour that has originated from the brain)
I remember the day very clearly … and most of all I remember Liam finding a positive in the situation saying “Ash we can do loads of stuff now I’ll probably get a week off of school” Little did he know he wouldn’t have to go back to school ever again – we couldn’t share that with him he would have burst with excitement!
Liam underwent 1 year of chemotherapy – initially to reduce the size of the tumour eliminate the headaches and prevent further side effects.
This did not work and we started to see that Liam became more poorly – the chemotherapy was attacking his immune system, making him loose weight very quickly. Liam said – “There are worse things in the world than round one not working”
To support his statement Liam wanted to raise money for other children who he felt were more in need than he was and he completed a sponsored walk to raise £500 for Sebastian’s trust and later received a child of courage award for his efforts.
Liam was due to undergo another 70 rounds of chemotherapy – of a different kind. What we didn’t realise was that as well as the obvious side effects (losing your hair etc) What Liam didn’t tell us was that it was also extremely painful in the aftermath. It got to a point where Liam told us he was not willing to have it anymore after 35 weeks. He said that he “wanted to be him again as best as he could”
So we respected how he felt and we took time off – we done fun things that now 14 year olds liked doing !
Aug 16 – Liam was granted to be able to go to Oklahoma and receive incredible treatment called – Proton Beam therapy. – (this is a type of treatment that uses protons to reach the tumour – the difference is when it reaches the affected area the beams stop – leaving the good tissue unaffected). We do not have this in the UK as of yet.
It takes a while for the radiation to leave the person being treated and we had to wait 6 months to see if this had worked - Sadly it hadn’t.
October 2017- After regular scans and appointments we had the news that the tumour was growing, his headaches were back, his temperament was rapidly changing and his eyesight got noticeable worse – he was now blind in one eye and could only see 20% in the other.
We sat with Liam in the hospital with his surgeons and we had 2 options a) would we do nothing to interfere with the tumour and ensure that Liam had a comfortable journey here on. Or would we b) opt to have an operation to remove a percentage of the tumour. ( We knew from the start we would never be able to remove 100% because of the location.
Option a) would give us limited time with Liam option b) May give us years – but it didn’t come without its risks.
We decided to have an open conversation and Liam said “when the time is right, if I have to I will have the operation – if it doesn’t take me away from me”
The tumour was growing rapidly in the background and scans highlighted this quickly.
December 2017 – We had been called in –– We received a date for the operation … The headaches were getting too difficult to control.
January 2018 – The night before the operation Liam was not able to sleep (understandably) – so instead we both stayed up the whole night talking about what Liam liked, what he wanted to achieve and the things he cared most about – 3am that morning Liam had his first ever seizure.
Operation Day – Liam underwent a 19 hour operation to remove 50% of his tumour – in a bid to stop seizures and to save his life.
February – Almost 1 month later, Liam was fully awakefrom intensive care – THE BEST FEELING IN THE WHOLE WORLD. We were working hard to make sure he was calm and rested and that he knew what had happened – quickly we realised that Liam was now blind and had very little memory – but we had him! (we even got a smile on my birthday)
Now - We are WINNING ! – Liam is home – where he should be! Our time is spent rebuilding strength building on his memory and of course making new ones!
THE GOAL – I have promised Liam that we will teach him how to walk again, how to be independent and to regain control of his life.
To do this a lot of time is being spent doing physio in the evenings with Liam and having some funny and sometimes difficult conversations.
As Liam can no longer walk or be on his own at this time I am looking into a number of options to make Liam as comfortable as he can be.
Installing a wet room so that he can shower more independently
Looking into an external care team to help with a morning and evening visit to get Liam in ad out of bed, changes and bathed – and give mum and I time to keep on top of the net steps.
Installing ramps so that Liam can get into the garden (his favourite place)
A therapist session 1X per week so that Liam can deal with the emotional side effects of what is happening.
Through all of this, Liam has not complained, not moaned and not given up. He puts on a smile every day and says “I’m getting there aren’t I Ash”.
I will forever boast about being his big sister – because I am so incredibly proud of him!
On behalf of Liam – Thank you SO much for taking the time to read his story and raising awareness for Brain Tumours. xxx
- Jolanta Kuriata
- Daisy Lawrence
- Emma O'Neill
- Paul Wakeman
- Andrew Gee
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