March 4

We really thought we would have had to move Joshua to the Hospice in Lowry this weekend. But yet again, he’s bucking the odds.

Yesterday involved spending most of the day on the couch with us drinking Fanta, of all things. He managed to keep it all down which surprised us all no end. They changed up his med dosages yesterday and they knocked him out about 4 pm and he’s been pretty sleepy since then.

He becoming a little less ‘together’ each day – a combo of tumor growth and lack of oxygen – he’s still talking, but often not relevant to the conversation.

So no ICC for us this weekend.

March 2

Some days it seems as if the time is here, then low and behold Joshua has a lucid, alert day and we’re left trying to figure out where we’re at.

His body is slowly starting to shut down. His stomach has stopped digesting, so he can’t even keep water down now. He still converses with us, but often he’s very confused about what he thinks we’re talking about and his short term memory only has moments. He drops off to sleep at a moments notice and is sleeping the majority of the time now.

That all said, he’s still got his funny bone working in there. He asked us this morning what our plans for the weekend were, as he heard us talking about zip lining… he then declared he didn’t quite feel up to zip lining at the moment! (While it was a funny moment Tony and I ran with, the whole premise was an invention he thought he’d heard. We figure he must be having good dreams at least.)

Its a situation I never thought I’d be in – wanting to hold on to every moment, yet wishing the end was here so he can stop suffering.

Feb 28

Tired today – too much listening to the baby monitor, and getting up for random puking episodes. Coffee… I don’t think you’ll be enough today.

Joshua isn’t doing well. We realized he was suffering from OIC late last week, which meant all the fun stuff to release that. Little bugger decided he kinda like enemas because he felt so much better after – only my kid!

But he’s not eating (going on a week now), drinking little, and pretty much sleeping the day away.

Our lovely Hospice Nurse, Dora, has warned us this might not change and he might just slip further in to sleeping all day. So we’re just spending time with him as we can.

Remember way back when, I complained about Cancer is a series of hurry up and wait? Well, we’re back there again, feeling a bit helpless.

Feb 23

Hmmm… so much for the going pretty well.

Joshua started vomiting at 6pm last night, and has kept going since. Not the greatest of nights sleep for anyone involved. We thought we’d gotten it sorted but then, off we went again.

Since it seems every time something goes down, it comes back up, I think its a bug – and there will be no more things going down until tomorrow. Then we’ll try again. Cross fingers its a bug, not a reaction to any of his medications (both the hydromorphone and the midazolam can have the effect of nausea… and Joshua does have a nasty habit of having reactions to stuff he shouldn’t!).

Thank god for emesis bags, because were on our third set of sheets and covers – without them we’d be ripping up carpet and the washing machine would have been asking for overtime pay and penal rates!

 

Feb 26: UPDATE : Nope – Opioid induced constipation, not a bug. Poor guy. Measures to rectify are somewhat… err… extreme.

Feb 20

Joshua is finally  weaned off the Keppra (so he’s no longer on the 2000/mg a day PLUS the Versed) and the steroid  is finished, so he’s much more alert than he has been for the last half of the week. He was pretty much a bit of a zombie there for a bit. The last two days he’s had a few hours awake each time he’s been up which has been lovely!

We got some photos with the Grands before the day was out:

Then the Lambrecht’s bought us over dinner – along with heart shaped cornbread. Cornbread is Joshua’s FAV!

Feb 19

Joshua had some visitors today!

And a 4 legged visitor. Van Gogh has a tail like a whip, is a happy happy dog who loves to play chase his ball… and has quite and interest in meeting cats! (MaoMao, how ever didn’t join him in his endeavor to be friendly!)

And topped the day off feeling really good, and had dinner out. He didn’t eat much, until he got to dessert… of course!

Feb 14

Rather than the treatments we thought we’d be having, yesterday afternoon was another Avastin treatment (it helps to strangle blood flow to the tumors so helps reduce swelling somewhat), starting a short sharp course of steroids until the avast in kicks in; then icing on the cake – he’s now connected to a Dilaudid and Versed continuous pump.

I don’t know Joshua really understood how much of a headache he’s been constantly having until the dilaudid took it away. So despite it being a not great thing, its a good thing.