Oh! That wasn't so tough!

We're back home after a very straightforward chemo session. Apart from a six hour administrative delay before we saw a doctor at Our Lady's on Sunday night, it all went very well. 24hrs of Chemo, 24hrs of post-hydration, a bit of sleap, and home! She spent the time waiting to be seen on Sunday using my phone to take pictures of any nurses that walked passed her window. She had her own room because of the stupid chicken-pox scare. Nice that she can sleep at night but not nice that she can't leave the room to go to the play room. Yvonne and I also had to spend our time with her in disposable aprons.

She's booked into theatre on Monday for a bone marrow aspiration so we can see how she's getting on. That will be...let me think...her sixth general anaesthetic this year. I've had one in my whole life. There will also be a urine test for catecholamine levels. Her neuroblastoma was confirmed by an increase in the normal level of this hormone, which prepares the body for fight-or-flight defence, so we'll be looking in a decrease in these.

She's had a bit of high blood pressure, and is taking amlodopine for this, but I reckon the high level is caused by the fact that she gets so pissed off when the nurses take her BP. She gets really stressed and even when not crying you can see she's very tense when they put the cuff on her. However it looks like we've sorted out the anti-sickness drugs, Zofran and Motilium, as she was hardly sick at all even after a full 24hrs of non-stop chemo. She was feeling pretty cruddy on Monday and Tuesday but last night she really perked up. She's back on the good form she was in all of last week, even after having to go through having the dressing changed on her freddie site. This was the first time that Yvonne had done this herself and did it brilliantly. It looked so neat!

On Friday she's due to go to Portlaoise to have a platelet transfusion. Portlaoise seem to have a habit of screwing up things like that. A platelet transfusion should take just a couple of hours. Portlaoise have to get platelets from Dublin on the day of the transfusion and they're also overly keen on keeping people in for 'observation'. At Our Lady's they want the kids home as much as possible and I agree with them. Nothing like your own home to convalesce. If Portlaoise screw up again and she has to spend the night because of a simple transfusion, we will be looking at scrapping them for local care and just going up to Dublin for any treatment. Portlaoise are yet to convince me that they are a capable shared-care hospital for cancer patients. We also need to go there on Sunday for a full blood count (FBC) before Ciara's operation on Monday. Fingers crossed that they can work out how to do that without an overnight stay.

Away from the treatment. So far this week I've had to tell a new employee, a client, and a vendor that Ciara has cancer. The new employee needed to know why his boss only does a three day week and is the only member of staff who can work from home. The client had shown a caring interest after finding out Ciara was unwell from Christmas. He seemed quite upset when I told him on Tuesday. It doesn't get easier telling people this stuff. Personally I tell people and immediately want the ground to swallow me up. It's difficult watching people who are visibly uncomfortable trying to find words to respond with. I normally end up saying something lame like "well, these things happen" and rapidly change the subject.

It's easier if they actually see Ciara though, she's such a clever and funny little person that people forget her illness. The office recently bought Ciara a new bear with her name embroidered on it's shirt. She previously had a big teddy bear called "Big Ted", a little teddy bear called "Little Ted", and the new one is somewhere in between.

She has named it "Medium Ted".

Ciara with "Medium Ted"

Now there was something else I had to mention. Something about a visitor we had? Nope...lost it. Couldn't have been that important.