Cian continues to sleep through Christmas as he enjoys
double figure sleeps during the night (10-13 hours)… although he will usually
wake in the early hours to devour a ham sandwich and cup of milk, before
returning to the land of nod.

He will also have an afternoon nap of about 3 hours… if 3
hours can be considered a nap!!

It’s difficult to know whether it is the disease, the
treatment, or just the accumulation of a month’s worth of crap sleep, that’s causing
this sudden change to Cian Van Winkle.

In the hours that he is awake, he drifts from good mood to
very irritated… usually good mood with mum and very irritated with me. I guess that comes with being the clown rather
than the caring parent.

No matter how ratty he can get, he never fails to make me
proud by his overall outlook and his attitude.

When he first woke up from his operation just over 4 weeks
ago, some of his first words were that he couldn’t move his legs and that he
would never be able to walk again. This
was his own immediate perception and not based on anything he could have heard
from us or the doctors. It was
absolutely heart-breaking to us as parents, as we were seeing (and I’m not over
emphasizing) an extremely active, sport mad 4 year old facing the reality that
he might not walk again… although this is not the reality we are willing to
readily accept.

Just a few weeks later he continues to work hard at his
physio, and he is not getting as frustrated at not being able to do tasks, and
he is more focussing on what he can do.

He got a golf set for Christmas that he is quite happy to
swing from his wheelchair; and this morning we opened another of his presents…
a Spiderman memory game. This looked as
though it was going to be problematic as when the cards were all laid out, Cian
could only reach the first line; and trying to point out what card he wanted me
to turn over was not going well… But Sarah, one of the support workers from the
charity Latch made a pole out of interconnected straws, which was long enough
for him to signal his choice. This was a
triumph!

And whatever parts of the brain the cancer is affecting, his
memory isn’t one of them. There have
been a few instances where he has recalled things from the past which would
have surprised me even if he was well… but he also comfortably won the game,
even without me having to give him chances.

He also played with his new wrestling ring and figures this
evening with mum. Thanks to his older
brother, Cian is WWE crazy!!


By this point, I had left the hospital and brought Dylan and
Bethany home for the evening so they could have a bath and sleep in the comfort
of their own beds.

For me, I had to put on a few loads of washing, sort out the
bins read for the weekly collection tomorrow and a general tidy.

I was anticipating a quite relaxed evening to write this
blog with the prospect of a little lie in, before we all headed back to the
hospital.

However, the visit of Gareth Bale has generated a bit of
media interest. As well as the
Wales Online article that was published yesterday, I have contributed to an
article for the next issue of the Pontypridd Observer, and now I have been
asked to be interviewed by BBC Radio Wales tomorrow (Monday) morning just after
8am.

I am willing to exploit Gareth Bale’s celebrity status to
promote the aims of this blog, and I am pretty sure that he wouldn’t mind me
doing so.

For the reason for these blogs are not only to keep everyone
informed of Cian’s progress, but also to raise awareness of AT/RT Cancer. The issue with a rare cancer, in my opinion, is that the large pharmaceutical
companies or cancer research charities are not going to invest huge amounts of
money into looking at AT/RT specific treatments and cures, because they could
only benefit a small number of people (predominantly children) and it would not
therefore be cost effective, and any treatment might even be cost prohibitive.

I am more than happy for anyone in medicine or the
pharmaceutical industry to challenge my assertion as I would like to start that
debate.

But we need to show how devastating this cancer can be, and
put a face to the statistics to force these companies to take notice and react. If that face has to be Cian’s, then so be
it. I don’t want any other family to
have to go through what we have.

Apparently there are no clinical trials in the UK, but some are available in the US. Are we, a nation where science; innovation; discovery; and medical breakthroughs are its heritage, going to sit back and allow the Americans to take the strain?

Personally, I don’t mind who takes the plaudits, as long as someone can find a breakthrough!