childhood cancer

childhood cancer

Thursday, September 29, 2011

A good day

Well, today has been much better.  We don't know for sure if it is the oramorph having a bit of a build up effect and now properly controlling Luke's pain, or if somehow he is miraculously getting better already.  I suspect I know which of the two it is, but either way, today has been pretty good.  I managed to spend the whole day at the hospital, and other than a few brief periods, Luke was on good form all day.

First course of chemo just about finished, and first blood transfusion of this process also now done.  I found out today that there is a blood donor unit permanently at Addenbrooke's, so while he is still there I will promise to make a point of getting along and donating.  My four months is up around now, and we found out today that Luke is the same blood type as me, so who knows, I may even be directly helping him.  Even if not, it is an easy and important thing to do which I am proud of doing regularly now.  I spent years being afraid of needles and refusing to do it, until I was basically pushed into it by work colleagues in a new job a few years ago.  It doesn't hurt at all, doesn't cost anything to do and, as we are finding out, is tremendously important.

I managed to organise myself enough to spend the whole day at the hospital and not need to pop into the office today.  I have been lucky enough to spend most of the week there this week, which means I have been burning the midnight oil at home, but I have managed to get some done at the hospital too.  I am getting my head around how to use their very slow but very useful wireless network to enable me to be online without grinding the laptop to a halt.  Useful stuff given how much time we are likely to be there over the next year. Incidentally, work colleagues continue to be fantastically supportive, and are really making my life easier in whatever ways they can.  I am very fortunate to be in a position where I have colleagues who can support me, and a job where I can take work away to do at the hospital and at home.  Having said that, I will have to be in the office tomorrow afternoon, but if Luke is as good as he was today that's no problem.

We even had a few visitors today, which was nice.  I like to see our family on the good days, but when Luke is struggling, I really just want it to be the three of us.  We give our parents a bit more leeway, but I do find there is a very fine line between being concerned and supportive and it all being a bit too much.

Letitia and I spoke about her having a bit of time out soon.  She has been in the hospital 24/7 with Luke, and has always felt unable to let me do the overnight bit as she is breastfeeding and Luke has never taken to having expressed milk from a bottle.  But, at the moment he isn't having any breastfeeds to speak of, and is refusing solids, so everything is going through his NG tube.  Which means that I might be able to do the overnight shift at the weekend.  If we can get Letitia somewhere on-site to stay so she isnt too far away that is (she doesnt like the thought of being a hour's drive away from Luke).  I would love it if we can make this happen - I think Letitia needs the break, and I would love to be able to do more than I have been able to so far.

We aren't particularly looking beyond the weekend at the moment, as every day seems to change so much.  The consultants agree that Luke has been more agitated lately, and are worried that we think his legs are starting to lose their strength again, so may look at doing a scan early next week to see exactly what is going on inside him.  I am worried that the oramorph is masking things and might lead us to make a bad decision about coming home or not, but then I guess we have to put our trust in the nurses and doctors to make the right judgement call.

1 comment:

  1. You have provoked me into googling where and when to give blood - I've been meaning to for ages but I'll do it now. Glad he is feeling a little better.