Oscar Knox: 'We held it at bay for ages... now this cruel, ugly disease is starting to win
Writing on The Oscar Knox Appeal blog, mum Leona Knox movingly describes in her own words how her little boy 'doesn't do giving up'
Since March 17 Oscar has been going through hell, and so have we. Up until that point he had had approximately five months of relative stability – minimal treatment, maximum fun, and his neuroblastoma had been held at bay.
Throughout that time he remained on morphine to manage the pain his disease caused him, but you would never have known.
He lived life to the full.
However, it has been our experience that neuroblastoma tends to pull the rug out from under your feet the moment you begin to count your chickens. Such a cruel, ugly and despicable disease it is.
And the heartbreaking truth is that now, after two-and-a-half long years of trying, it is finally beginning to win.
In the past four weeks Oscar has suffered more pain than we could have imagined, and more anguish than any five-year-old should ever know.
He would scream and cry in agony that simply could not be eased, while morphine, sedatives and anti-anxiety medications were pumped into him 24 hours a day.
In the quiet times he said things like "I don't want to be a boy anymore", and "I don't want to be me".
We were pushed to the limit of what any parent could tolerate in terms of watching their child suffer.
Oscar is now on an extremely high dose of diamorphine, more than nursing staff have known adult cancer patients to require, and thankfully those days are behind us.
It is a miracle that Oscar is awake, and functioning, but that is our wee Oscar all over.
I said to our wonderful consultant a couple of weeks ago: "I don't think Oscar is going to give in to this diamorphine."
e replied: "Your son doesn't do giving up."
You must appreciate that, as always, we have explored every avenue possible to give Oscar every chance he could have to beat this monster.
With all options studied in depth and discussed through tears, we took the decision to move our family into the Children's Hospice.
Although this was an extremely difficult choice, it has been without doubt the best one for us as a family, and in particular to meet the needs of Oscar and his little sister, Izzie.
It is so important to us, and to Izzie, that she can be close to Oscar, and to us, which is just not possible in a hospital environment.
We still do not know what lies ahead, or how far ahead these questions might be answered.
We simply have to wait to see what move his neuroblastoma makes next.
The kindness and compassion shown to every person coming in through these doors is phenomenal.
The staff looking after Oscar on a daily basis are like angels, with hearts of gold.
Nothing is too much trouble, and nothing is impossible. Oscar's every request is met with a smile.
Oscar and Izzie absolutely love it here.
They call it "the holiday house", which means absolutely everything.
Right now there is no place better we could be.
The Oscar Knox Appeal blog can be found at oscarknox.blogspot.co.uk