B is for Blood

We've had an improving few days on the energy front. This morning we've even had 'circle time' with PJ, Leo and I doing a bit of dancing and then sitting down to sing the alphabet for about an hour with Leo as our teacher. Each time we got to the 'now you know your ABC, next time will you XXX' Leo changed the final sentence to say things like 'swim in the sea..with me?', or 'have a cup of tea?' It was so nice and really warms our hearts that Leo loves learning and being in charge!

'A' therefore is having an 'absolutely' fabulous morning.

'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.

So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.

We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!

Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.

Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.