Zone Doubt, a.k.a. 'Surreal Я Us'...
Joules, trusted by... dozens... to make a drama out of your crisis...
:: JAT :: WaveWrights :: Publications :: Joules... on writing [on hiatus] ::
I live to write. It's not wise to get in my way.
August 2011: the earlier posts in this blog are a mess, the result of me changing the format some time ago. I'm working to edit the entire blog from the beginning, but with over 4K posts and sodall time for such luxuries it's going to take a while... [02/09/16 - Now reached 09/10/2004]
If you come across any words you don't recognise in this blog, take a look at the Taylorspeke Glossary in the left-hand infopane, you'll usually find a definition there.
Tuesday, September 02, 2014
20.45: Later edit: down here.
Well, today's the day - we hope. Last night Kai had a temperature and was getting intravenous anti-bios - again - followed by something for his low blood pressure (!!) and then the normal platelets. Platelets were nearly through when I had to get offline...
Chemo. Yes, there are four different things on the go here - hydration, MESNA (which is a thing that protects the bladder, we're told) and two different sorts of toxins...
Catchup. As I've said, I was told about the usual side-effects of the injections, overall aching (though no-one said anything about the intensity or the fact it could be anywhere, including for me my jaw, cheekbones and up around my ears) but no-one mentioned the other side effects - constant nausea and complete loss of appetite (though since they cancelled each other out I suppose that was more or less OK) and generally feeling bloody awful. And come Sunday the side effects of the chemo finally hit Kai too, so we were pretty miserable together...
In contrast, the actual apheresis yesterday was a doddle. Yes, it was uncomfortable - big needle in the crook of my left arm to remove blood, small one in my right wrist to return it, and sitting tilted so my weight was on my lower back (ow) for the three and a half hours it took was no fun, but the only side effect was a general tingling, which was, apparently, calcium deficiency corrected by chewable calcium tablets and a small intravenous unit of calcium phosphate (I think it was phosphate...) Which, as is pretty much the norm for us, took them three bags and two machines to administer, and even then they had to push it through manually. (What is it with me and machines?) Anyway, the actual harvesting was noisy but painless, and it was fascinating to watch the bags fill, greenish-gold plasma and pink-tinged cream-coloured stem cells (I assume it was just the stem cells...)
Almost as soon as they started the procedure I started feeling better, and apart from being completely exhausted last night I was fine. And to my relief they harvested 'more than enough' cells to provide the transplant material, so I don't have to have it repeated today.
Just hope the right stuff is in there...
Afterwards I went down to radiotherapy with Kai for him to have his TBI, which was relatively quick and painless, then back to his room. I couldn't stay much longer, I kept nearly falling asleep, so headed home.
And today I feel fine - a little achey, but I'd expect that. Kai is now on skype (9.45) and feeling a bit better than yesterday - his temperature has dropped too, so please keep fingers crossed. No news yet when the transplant will be - I assume as soon as the lab have prepared the cells - but I'm hoping to be there. Heading off in after I've got the shopping.
Sue, card arrived, thank you. Will take it in.
Lin, forwarded that lovely trawling, but unfortunately it looks like Kai can't receive emails (the connection is a bit glitchy on that side of the building: they think it's the lead in the structure of the old radiotherapy rooms). Will skype everything individually.
Possibly more later after I've visited...
Arrived back from shopping at 11.35 to find a skype from Kai at 11.09 saying, "OK, cells 'any time' so will get time in a minute". Cue mad scramble to get to BHOC in time, and I arrived as they were just being delivered...
The atmosphere was so positive, it almost felt like a holiday. Everyone was so cheerful and upbeat, we couldn't not feel the same.
In the scramble I forgot my camera - these are from my phone camera, which isn't so bad. This one has the donor/recipient details (if you can read them).
At the beginning...
... and at the end, an hour later. The bag on the left is saline flush, which they used to flush out the last of the stem cells in the bag. 'Precious', they said. 'We're not letting any to go to waste!'
It was very strange. And oddly anti-climactic. It looks like raspberry slushie... If Kai is going to get a reaction, it's usually within the first 30 seconds, so we both sat and watched, and everything was fine, and he looked at me and said exactly what I was thinking: 'I don't know if I should sit and watch this, or just go on with what I was doing...'
It's not every day you get to watch your mum's cells (your cells) being transfused to potentially save your (son's) life.
Eventually we did a little of both. And it all went just fine, with no reaction (well, at the end his temperature had dropped to perfectly normal) and him feeling fine too.
This is great, of course, but it's just the first stage. The next possible event is the cytokine storm - and before you check that accurate but quite frightening link, please understand that this is so normal with transplants that we were told what to expect when - not if - it hits. The BHOC have everything immediately to hand to deal with anything that happens, and Kai will be monitored closely for the next however long it takes.
Then again, when have we ever done the expected...
I'm back in again tomorrow, will report back later. So far so good, but there's a very long way to go.