Wednesday, 23 November 2011


Well home last night. Was lovely to be in my own home, own bed, own everything.
Callum woke at 8.30am which was fantastic, not sure if it was cos he was exhausted from nursery yesterday or the Piriton given to help the last red bits of his rash fade!!! Hey ho who cares, I appreciated the sleep.
Callum was in a fab mood this morning. We went to Wacky and met friends up with their little ones. Callum actually went off and played, he seems to be turning a corner socially perhaps that's because he has just turned 2! It was lovely to catch up with friends and have a chat and be out of the stuffy hospital ward. I had exchanged places with Paul who was on night duty and in charge of Harry's final scan for a few weeks. Yippee. Although results not through and we pretty much know that the results will show that Harry has neuroblastoma in several other places, the relief of the tests coming to an end is great. Harry has started to flinch when anyone unfamiliar comes to his bed for fear of being prodded or poked, or taken somewhere mysterious where he is put to sleep! Hopefully if he remians stable he can come home for a couple of days next week.
He has needed a blood transfusion today as his blood count is low. He has been busy painting today, but has become very lethargic as the afternoon has gone on. This is due to his low blood count. Low blood count is typical of his treatment plan and he will likely need many blood transfusions or platelet transfusions over the coming weeks. Which also brings me to the topic of giving blood or platelets. I have never done this enormously good deed, but has certainly made me think how fantastic it is that people do give blood. Apparently blood pools historically dip this time of year, prob cos people out chrimbo shopping amongst other reasons for people not to give up time to give blood, but without this blood Harry would be in serious trouble.
Harry has loose stools this eve, most probably due to the enormous amount of movecol and lactulous he has endured over previous days to get his bowels moving. Due to protocol his poos have to be tested in case there is an infection and these tests take 48 hours to get the results through. The silver lining to this predicament is they have to isolate us. Yey, that means a room to ourselves - peace and quiet and if results take 2 days to come through then that could mean a quiet night tomorrow too!!!!! Think I may do duty here tomorrow night too!!!!
Well will sign off for now, as have to gather belongings, whilst the staff figure who to move around to create us a bay or room to ourselves!

1 comment:

  1. what an inspirational woman you are Sarah. The courage you are showing in the face of this adversity is awe inspiring. Harry, Callum and Paul are lucky to have you, and your strength, positivity and humour can only do Harry good. Take care, Kate xxx