Tuesday, 13 May 2014

Week 16 Diary Luke Aemia

Monday 12th May

So Jacinta had been looking a bit bruisey the last few days. She had shown up a bunch of petechiae and cut herself somehow on my computer, reopening the wound twice like a warfarin junkie.

When we presented to Day Oncology on Monday she was quite pallid. We had our finger prick blood test in pathology (after waiting in the wrong spot - which the receptionist had indicated - and then after going to the right spot being completely ignored until I realised they were calling the person with the number 4 after ours...grr..) and thankfully I had requested a couple of backup bandaids. Yeah. The first one was needed about 10 minutes later.

Jacinta loves to chew on her bandaids. When you combine teething with low platelets it's a bloodbath, plain and simple. I realised it had come off because there was blood on me. I looked to find Jacinta looking like a vampire, with blood on her sleeve and the legs of her onesie. I got a fresh bandaid on. It came off again. More blood on my shirt and on my keys, on her face. It was getting ridiculous. Fresh bandaid on. Off it came, blood on the chairs. We saw Dr Molly, who agreed it was hilarious, and ordered transfusions of everything without even waiting for the bloods to come back.

We bled again all over the reception desk. Thankfully they had their own supply of fresh bandaids. I got two on this time, which gave us a bit longer. I managed to dispose of the evidence, getting Jacinta into her day clothes after her weigh. (She's putting on weight. Yay!)

So as I suspected we were in for the afternoon for blood products. There's not much that's more mind-numbingly boring than transfusions - unless you have issues with plasma. If you have issues with plasma, transfusions are anything but boring! We do not have issues with plasma.

My middlest managed to entertain herself for 5 hours with very little help from me, which was amazing. My deepest fear when we are there and she goes off to play is that she will get into an argument with one of the sick kids and sock them one in the head. Thankfully, so far, no violence.
She got a lucky dip for being so good. I think she deserved it.

The good thing about Day Oncology is they go home at 6.30, which means, so do you! They'll cut it as short as possible to make sure everyone gets out the door on time. No "I'll just run the flush a bit longer while I find out what's happening....". Nope! We're on top of things.

So it seems our neutrophils are at .73. This means we could theoretically start chemo if we had to. We can't yet because we're only at Day 14 or so, so we don't know if we're going down still or coming back up. It would appear, since we needed platelets, that we are going down. I guess we keep away from the sneezers and the coughers now. Fingers X that's the only transfusion for this round, no temps and back in on 26th. Fingers X.....

Week 15 Diary Luke Aemia

Monday 5th May

So I've skipped Sunday because nothing much happened medically and we had an appointment on Monday - or so the piece of paper said.

In actual fact we got there after going via pathology and having bloods done only to find that the appointment should have been for Wednesday. There had been much changing of minds in the admin/doctor area the previous week and they had booked and rebooked the Wednesday appointment. My sheet said the Wed had been cancelled and my appt was Mon. In fact that Mon had been cancelled and Wed rebooked. No matter, we saw Dr Molly anyway. We love Dr Molly.

Jacinta's white blood cells (neutrophils in particular) had gone up, which is interesting, to a super nice level. (About 3.0) So no need to avoid Chadstone that day.

We started thinking about how the next round might roll out. Dr Molly showed me the protocol which is 7 days' continuous infusion (yuck!) of something toxic with 3 days' continuous infusion at the beginning of that 7 of something else toxic. (Two at once for the first few days.)

Dr Molly seemed to think that we might have to be in for the days where we had two running. Hmmm. I guess we'll see. If nothing goes awry, we're looking at 26th May for this. The rest can be done at home I believe.

Tues 6th - Sat 10th May

One long week of having a yucky fluey thing and teething. Jacinta's been fine in terms of hospital admission parameters. Managed fine (not enjoying though) with the flu/cold. No temps to speak of.
Next appointment Monday.