Hello
This is the story of my beautiful boy Daniel.
In April of this year Daniel,then 16, was complaining of headaches for 4 or 5 consecutive days.
initialy I put it down to lockdown blues but on the 5th day I phoned my GP and was told to give Daniel some Ibruprofen.
The headaches disappeared more or less immediately.
As lockdown continued it allowed our family to take long walks and try to talk to each other.Anyone with two teenagers would know that this is a simple pleasure but a rarity in itself.
Daniel would not complain of going on a walk with his younger sibling Saul (15),and my wife Alison and I.This was unusual as tearing him away from his phone for any length of time was usually met ferociously.
Whilst going on one of our walks I noticed that Daniel's walking had become unusual in that he his movement with his right foot had an unatural look about it.
It was odd but my wife and I put it down to his laziness by not walking properly.
A week later his handwriting became untidy which was causing him a lot of frustration.
I phoned my GP and after Daniel had carried out a few tests at the surgery I was instructed to take him straight away to the QEUH in Glasgow.
I still was not overly concerned, and this if from someone who is neurotic at the best of times.
Eight hours after arriving Daniel had a CT scan.
30 minutes later our lives changed forever as the doctor on duty told me that my son has a Brain Tumour.
This was May 1st at 20.30.
Three days later he had a biopsy and 10 days after that we had our results given to us by Daniels Nuerosurgeon.
We were waiting on his arrival and as the minutes ticked by it felt like life was standing still.
The next 10 minutes was going to have a catastrophic impact on our lives forever as we given a brutal assessment of Daniels tumour.
it was the worst possible news as he had condition called
Diffise Intrinsic Pontine Glioma Grade 4 and Inoperable.
He was told in front of Us that he had 6-9 months to live.
Fast forward to today and Daniels condition is extremely poor.
Words can't describe the pain rippling through my body on minute by minute basis.
His walking from day one has been horrendous.
watching him struggle with even the basic tasks in life has been so painful.
He is a tremendously popular boy , great looking lad ( the girls love him) and his group of friends are all like us .. totally devastated.
He got wonderful grades in his Highers and was all set for his last year at school , driving lessons , boys holidays, and the joys of living a full healthy life ahead of him.
The thought of losing my precious boy feels like someone is tearing my heart and Soul out of me.
My wife feels the same way.
We are terrified , full of despair in the absolutely hopeless manner of our Oncologist , Full of bewilderment in why in 2020 there are no solutions to this as the moment you have this prognosis you are in palliative care.
There has been 6 months of frantic phone calls to all sorts of specialists abroad , Drugs from Germany that we pinned our hopes on , the possibility of trials that were forthcoming but ultimately it's all been fruitless.
What I would say to anyone who has been diagnosed with a Brain Tumour and it's treatable is to enjoy every day of good health and depite the devastation of your original diagnosis remember not everyone's condition can be treated through removing a tumour mass or has a benign situation.
Finally my last thoughts are when you are in our position
you look back and would give everything to have "Normality".
its a simple word but never has the word Normal been so meaningful to me.
Love Brian.
x
