childhood cancer

childhood cancer

Saturday, November 5, 2011

Where to start?

Well, its been getting on for a week since my last post.  I don't know why exactly, it jut feels like it has been a really hard week, and I have been too tired to find the time to write the blog.

First thing's first - Luke is doing ok.  He isn't eating at all well, hasn't wanted any solids at all since the chemotherapy really, and so is surviving on breast feeds and top ups through his NG tube.  The biggest concern with that is that we are really struggling to give him as much as the nutritionist at the hospital advised us to in the event that his stopped eating solids.  140 ml six times a day is a lot when even 100 ml seems to make him uncomfortable.  We keep on trying, but I expect he is losing weight again at the moment, and I just hope he will want to have solids again before too much longer.  Even trying all of his old favourites, and new and exciting things, he just doesn't want anything going into his mouth.

He has been much more sick after the second round of chemo than he was the first time.  Several times this week we have had quite violent sickness, which isn't at all nice for Luke.  We had been prescribed one anti-sickness drug which we were giving him.  We spoke to the hospital who told us to up the frequency of doses, which we did, but he was still sick.  We then asked them if something else could be prescribed, which they did right away.  We learnt a lesson that day though - Addenbrooke's asked us where it was easiest to get the prescription from - our GP or our local hospital.  We said our GP - the surgery is only a short walk away.  But then we found that no chemists in the area could fill the prescription straight away - they all had the right drug, but none had it in liquid form.  My poor step-dad was trying different chemists, I was ringing round ones slightly further afield, the community nurse happened to be with Letitia and Luke at the time and was calling her colleagues to see if they knew where it would be.  In the end, the community nurse got another prescription through the local hospital which a friend then went and picked up.  Now we have some (several bottles in fact) we will be ok, as we can order it from the chemist and give them a day to get it in.  But when we really needed it, the thought of waiting even another hour was a bit tough.  So, if we ever need a new drug again, we will get it straight from the hospital.

But, even with the new anti-sickness drug, Luke was still sick again on Thursday - so much so that it forced his NG tube out!  Since then he has pulled another two tubes out, so in the last 36 hours he has had his tube put in three times.  That is currently a record (one that I am sure Luke really doesn't want to beat).

I have picked up a cold from somewhere - it means I am trying to keep somewhat of a distance from Luke much of the time.  It's easy when I'm at work, obviously, but for some reason his sleeping patterns are all out. He has still been up every evening this week when I have got home.  It is brilliant for me, because I get to see him, but it does make it hard work for Letitia.  On Tuesday he was up until 11pm.  I think actually he is turning into a teenager, because he is then sleeping in more in the mornings - 8.30ish has become his normal wake up time.  Trying to keep at arms length from Luke so I don't give him my germs is difficult, so I am using the alcohol gel like it's going out of fashion, and breathing the other way!  I am also sleeping in the spare bed to try and make sure Letitia doesn't get it.

I know we were told to expect the second round of chemo to be harder than the first, and that the side effects will get worse over time, but I hope it doesn't keep getting worse at this rate.  Generally Luke is doing brilliantly, and he is really happy most of the time.  I am worried about his not eating, though, and the sickness isn't at all good.  Still, we have the MRI on Friday, so we will finally know what this little bugger looks like and whether we are beating it yet.  That is something which, while I am nervous about finding out that it's not progressing quite as well as we want, I really need to know.


  1. Hope the sickness calms down soon. Luke sounds like a real trooper - much good luck and good wishes to you all.

  2. How was the scan?
    Hope Luke's sickness has stopped and things are moving in the right direction for you all