Monday, 23 June 2014

Weeks 17-19 Diary Luke Aemia

Sooo.... I guess I was not blogging every day!

Actually I've had a bit of a lengthy bug, culminating in a lovely sinus infection, so sleep has been a high priority - and I might just have become addicted to How I Met Your Mother and felt the need to watch the entire nine series from the beginning.....

So, where we left off, I was hoping for no more transfusions, no fevers and starting again on the 26th. That's pretty much what we did. We had a blood test each week and the neutrophil counts were never below 1.0 after the last one I mentioned.

So we reported in on the 27th for a bone marrow aspirate (BMA) and to start chemo for round 5.
There was ridiculous traffic on the freeway so we ran about 30 minutes late for the scheduled theatre time after my hilarious snakes-and-ladders attempt at finding a quicker route. They didn't mind. I remember how panicked out I was about running on time for Jacinta's heart surgery. It's a bit different when you're coming in for a procedure that takes 15 minutes and you have one every few weeks I guess! We were number four on the list. I'm sure they could mix it up if they had to...

So we had that, recovered nicely and headed straight upstairs (via breakfast).  We saw the big head honcho lady (absolute head of oncology) straight away. She said that we would start this next round of chemo that day. No need for an echocardiogram, she said. She said they'd admit Jacinta and see how she goes and see about letting her out after a few days if she was going well. I said that the nurse co-ordinator had told me we'd be doing it as outpatients. She said we'd be doing it as outpatients then. (I love the slightly disordered chain of command on these things.)

So we went out the back (the fancy name for the back area which is just as lovely as the front area, with a fish tank and toys and televisions and paints and a few beds and lots of treatment chairs etc, plus tea and coffee and sandwiches and little nice things for parents to munch on. There's chemo and blood products there too!

They had to run one new drug, called etoposide, for one hour. Then they hooked up the cytarabine to run over 24 hours. It was in a little canister, which they call a "Baxter", quite imaginatively since it's made by Baxter.  It's spring-loaded in super slow motion. There is a little balloon in there, which is filled with the chemo. Unfortunately the best way to describe it is that it looks like a filled-up condom. I imagine.

So we went home with this in a bum bag. (I'm not sure what these are called in other countries - I'm pretty sure it's not "bum bag".) This didn't stay around her waist in the slightest and was in danger of ripping her line out. Instead we went with the pinning option. This wound up tearing pretty decent holes in Jacinta's singlets...

The first three days we ran both drugs and had to come in. The fourth day was just the cytarabine which could be changed from home. The nurses came out to us, which is soo much better.
The week passed, the 6-hourly eye drops ended and life went back to normal, pretty much.

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