Wednesday, 16 April 2014

"Your son doesn't do giving up"

Since 17th March Oscar has been going through hell, and so have we.  Up until that point he had had approximately 5 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 2 and a half long years of trying, it is finally beginning to win.

In the past 4 weeks Oscar has suffered more pain than we could have imagined, and more anguish than any 5 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 hrs/day.  In the quiet times he said things like "I don't want to be a boy anymore", "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" to which he 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.

If you didn't watch the BBC NI documentary on the Children's Hospice, you really should.
search for "True North S02E04 - Children's Hospice" on
We did, and were so impressed by the staff and services available, but it is nothing compared to the experience of actually being here.  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!  Lovely home cooked food for every meal, endless cups of tea, fun and laughter and messy play at every opportunity.  Right now there is no place better we could be.  It is also such an eye opener to see how this invaluable sanctuary manages to operate on very limited funding.  Teams of volunteers are in place every day to keep everything ticking over, and donations seem to account for a lot of materials on site.

It must sometimes seem like we have made every aspect of our journey public knowledge, but this is far from the truth.  We were anxious to make sure that after we made the move to the Children's Hospice we would remain in control of what is known about Oscar, but any fears we had were unfounded.  It feels like a haven, our privacy is completely respected, and we have been given space and time to be a family.  Everything we could wish for at this time.  Oscar and Izzie absolutely love it here, they call it "The Holiday House", which means absolutely everything.

Once again, we are so grateful to everyone who has supported or helped us in any way.   Particularly the amazing teams in both the Children's Hospital and now the Children's Hospice.  Nothing can take our pain away but some people really make a difference.  From the bottom of our hearts, thank you.  Oscar and Izzie - you deserve our biggest thanks.  You are amazing people and we love you more than words can say xxxxx