childhood cancer

childhood cancer

Wednesday, October 12, 2011

Time-strange stuff

Today has been fairly plain sailing (so far).  We only gave Luke a top of feed of 50ml last night, having given him more during the day to compensate.  He didn't wake up when we did it, and had a pretty decent night's sleep - which also meant that Letitia and I did too (well, I did once I finished working and got into bed!).  Same plan again tonight, so touch wood, it will keep working.

We took a lock of Luke's hair today.  It was the sort of soft soppy parent thing I never really envisaged doing until we found out Luke had cancer, and would lose all of his hair through the treatment.  He has a proper little bald spot on the back of his head now, and it continues to fall, so we decided to take a lock now while he still has plenty!  I still find this part of everything really hard to take - probably second only to seeing Luke in any pain.  I just don't know why it bothers me so much.

I have been working from home today, which isn't something I often take the opportunity to do, but will try to more so from now on.  I work close to 50 miles from home, and that hour I spend driving each way is better spent at home with Luke.  It isn't possible/practical/desirable from a work perspective to do it every day, but once a week or so it should be possible.  It just means I can see him in the morning for a while before starting work, help with lunch, his bath etc, and have five minutes with him when I go downstairs to get a coffee.

I got round to ringing our mortgage provider this afternoon to talk about the position we are in, and discuss what options we have should we need to cut our expenditure for a while next year.  As it goes, there seem to be a couple of options, ranging from the very good, flexible arrangements which require of house to have risen in value over the last four and half years (who knows?) to basically reaching an arrangement with them to reduce our payments, but that may affect our credit ratings.  Obviously we would rather the first, but even if its the latter, to be honest, it would be worth it for Letitia to be able to have the choice to stay looking after Luke.  We'll have to see what happens - we have a bit of time before we have to make a decision, which is fortunate.  I just don't know what people do who end up in our position but don't quite have the flexibility in their situation that we do.

I can't believe it's Thursday tomorrow, and Luke is due back in hospital on Monday.  We had nearly two weeks with him at home, and it has evaporated to four days left. I don't know where that time has gone - if only the stretches in hospital went as quick as this time with them at home, then the next year would fly by!

Anyway, more work to do, and time to spend with Mrs Hutt.

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