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.

Staying positive (trying to, anyway!)

Today feels like it has been a better day.  Things are still largely the same as yesterday - Luke is progressing with the first cycle of chemo; his pain level is high so the oramorph is flowing regularly and just about keeping it in check; his legs seem to be slowing down again; and he isn't really interested in food.  But, with the pain under control, he is much more settled and comfortable than yesterday, which makes it much easier to take.

We learnt how to deliver top up feeds through Luke's naso-gastric tube today.  Not necessarily something I ever previously envisaged having to do, but it feels strangely great to be able to actually do something useful for him again rather than depend on the nurses all of the time.  We would have needed to know how to do it anyway before he comes home - but that might not be quite as soon as we had hoped.  The plan was for Luke and Letitia to come home early next week.  This cycle of chemo finishes on Friday, and the course of anti-biotics finished late on Monday/early Tuesday.  But, having discussed it with the consultants, if his pain levels dont subside quite a bit, everyone thinks he may be better off staying in hospital for them to observe and give pain relief.  As much as I can't wait to have them home again, we are pretty nervous at the moment.  If things get too much worse, there is even a possibility of more emergency surgery to relieve the pressure in his spine.  If he needs it, then so be it, but obviously we want this to be as straight forward as possible.

Luke will also have to have a blood transfusion tomorrow.  His red blood cell count is low, even though the chemo only started yesterday.  The poor thing cant have any of his own blood left - in the surgery on his back last month he had to have 150% of the volume of his own blood transfused during the surgery because he lost so much.  Which reminds me, I am due to give blood again any time now.

On the plus side, investing in the Britax Baby Safe Sleeper was a great move.  Luke only appears comfortable when flat on his back at the moment, and often needs to be wheeled around the ward (or just his bay if the tree of syringe drives is proving too tricky to wheel around with him).  The only problem is he fills up pretty much the whole length of it, and the lining seems to make him pretty warm.  Still, I'm sure in the grand scheme of things that isn't the end of the world.