childhood cancer

childhood cancer

Thursday, September 29, 2011

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.


  1. Found you blog after retweet by Alan Davies. Strength to you as go through this rollercoaster with your little man.

  2. Reached your blog after a RT from Rubens Barrichello. We're expecting our second baby for the next weeks, it really hurts me to imagine your pain as a father, as well as your son and wife's pain. I hope you keep strong to deal with it, and that your little Precious gets better every day.
    Greetings from Barcelona, Spain.