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 30, 2014
Tch' - still haven't checked the Days... However, found out from the dr yesterday that although as expected the 100 days is a bit arbitrary, the longer Kai goes on without any problems, the more reassured we can be that G-vHD is less and less likely (although it doesn't rule out chronic G-vHD). After the 100 days, they feel safer stopping some of the meds, and life can start getting slowly back to what passes for normal. I'll check the precise days later: I can't remember if the day of the transplant is Day 0 or Day 1.
Bought Kai some cheap Primark T-shirts and sewed little pockets inside the fronts yesterday, for him to tuck the central line and lumens into at night - he said this morning it was a brilliant idea and much, much more comfortable to sleep, so that was good.
Typed out Kai's meds regimen to make life easier:
We will be very glad when he can come off some of these.
Sewed the second organza curtain for our room today: we're nearly finished. Just need to get the pelmets fixed and put up the display shelves. Still more to do in Kai's but it's non-essential.
Finally got to watch Passion of Darkly Noon today (by myself as it's not really K&K fare). Strange and depressing film, interesting to see Brendan Fraser in a different role. Can't say it'll ever be a favourite though.
Sunday, September 28, 2014
Quick catch up because it's late and I'm tired...
I was woken up on Friday by the Day Unit ringing to say to stop Kai's voriconazole and go back to the itraconasole, which should get rid of the blurry vision. We still have thirteen boxes (which sounds like a lot but there are only 15 capsules in each and he has to have three twice a day) so I didn't need to go in to pick any up. In the evening we watched The Lone Ranger, which I picked up very cheaply a few weeks back, expecting it to be pretty poor, but it's actually not bad. Very funny in places, and a good fun film for the end of a tiring week.
On Saturday I went to Wells with Dawn, intending to pick up some more of the alpines for the rockery, but the plant man wasn't there! (How inconsiderate!) I did find a few other things I was looking for though, and it was fun chatting. Enjoyed Doctor Who in the evening (and I really do like this incarnation!)
The usual manic Sunday - washing, shopping, then Ken and I did a little gardening: the sweetcorn have finished (I have two large bags in the freezer) so I got rid of the stalks, then weeded the iris beds, and Ken hoed the veg bed and emptied the small compost bin. And after dinner we watched The Secret Life of Walter Mitty - which was extremely enjoyable, a very gentle film but a fine watch. I like Ben Stiller. He's not a great actor but what he does he does very well.
Going to try for an earlyish night, though it's probably not going to happen...
Thursday, September 25, 2014
Quickie, knackered again. Appt went well, they're still very pleased, but Kai's been having slightly blurry vision, so they got us an urgent appt at the eye hospital (across the road and round the corner) to confirm it was nothing physiological. It's not - his vision is near perfect - so it's almost certainly a side effect of the voriconazole he's on. We'll all monitor it and if it gets worse he may be able to go back to itraconazole, but he was fine this afternoon (and we confirmed there would be no lasting harm done).
Were reminded today of the 100 Day thing, which if I remember correctly (on top of everything else I'm having to remember) means that if everything goes well for a hundred days after the transplant, it can be considered a success (and the disease in remission? I'll try to remember to check that next week.) I'm going to start numbering the days anyway, and will prob backdate the posts too, when my brain is a little more awake.
Monday, September 22, 2014
The doctor was extremely pleased with Kai's counts today! I get the impression he's improving faster than anyone expected. Fingers tightly crossed it continues and nothing goes wrong...
We had to go back in in the afternoon though - Kai's magnesium was low (they can't tell that until after his blood review comes back from the lab. They can check the counts on the day unit in a few minutes, but more detailed results take longer.) A bit annoying, after thinking we had the afternoon off, but it all went smoothly.
I'm exhausted though - hoping for an early night.
Sunday, September 21, 2014
Sunday. Gave Kai his morning meds/washed the towels/got the crickets into their tank/watered Feather and Rosa/prepared and froze the homegrown pears/got breakfast for K&K/did the shopping/made lunch/sewed Kai's wardrobe curtains and pelmets/made the first of the new organza inner curtains for our room/ordered tomorrow's taxi/made dinner/collapsed...
I need a 60 hour day.
Or a holiday, that would be nice too...
Kai is very happy with his new room, although he hasn't found a desk he likes so is managing with the two old ones - he has much more room now. All told, it was a great idea. He's still feeling awful, of course, and has lost almost all his hair (but not quite, and it looks like the sparse strands he has left are going to stay. Planning to trim them close to his head tomorrow, at the moment it all looks a little odd) but is more alert and himself than he's been for a while. Fingers crossed his counts are still improving tomorrow.
Friday, September 19, 2014
Kai's home. He feels pretty awful, is desperately tired, and his hair is coming out in handfuls - literally, he sat with the bin and pulled it out (well, if he doesn't we're only going to have to clear it from his pillow/bed/bedroom floor for the next few days...) But his counts were back up today, the drs says he's "platelet independent" now (must ask what that means on Monday, as I didn't think his platelet count was high enough) and they're happy for him to be here.
Now have nine new meds to learn to dispense, oh joy!
Oh, one minor blot: his immune system is really now gone - he'll need all his childhood vaccinations again, and his system will have to reacquire his resistance to all the usual cold bugs etc - so for at least three months we can't have anyone come into the house (and it would be sensible for us to shower and change if we go out in company before being near him again). We've managed this before, when Wendy and Sue and GoodTwin have visited, but this is just a heads-up for any potential autumn visits.
Heh, that wasn't very eloquent. But I'm knackered, so please excuse me.
Thursday, September 18, 2014
Quick check in:
I forgot to say Kai was moved down to TYA on Sunday (I think it was) - back to the really nice room with the picture window and dedicated desk, so the last few days have been much more comfortable for him. His counts today were a little down on yesterday, except for platelets, which were up to 48, but stopping the G-CSF most likely accounts for that. WBC is still way up, which is great.
Still hoping to be discharged tomorrow if all goes well. His room here is basically ready - I still have the wardrobe curtains and the pelmets to make, and everything needs to be tidied up and put away, but Kai will need to do that himself.
Oh, and he's started losing his hair... He's not bothered, but I've started looking for a hat for him. Fox related if I can find one. Will check out Etsy and Redbubble at the weekend.
Wednesday, September 17, 2014
Update time while I take a break from painting/organising Kai's new room.
We were told that the usual time to see changes was Day 14 after the transplant: that would be Sept 16th. For us, things started happening on Day 13 (my lucky number...)
Have some numbers! (Sorry about the formatting, tables have been deprecated and I don't have the energy to hunt down the correct coding... WBC = white blood cells, RBC = red blood cells.)
Normal Range Sept 12 Sept 13 Sept 15 Sept 16 Sept 17
WBC: 4.00 - 10.00 0.02 0.03 0.36 3.22 7.95
RBC: 4.50 - 5.50 2.47 2.50 3.24 3.32 3.59
Platelets: 150 - 400 11 6 22 28 38
Neutrophils: 1.50 - 7.50 0.20 2.50 6.04
In short, this means the transplant has engrafted and Kai's bone marrow is making white blood cells and neutrophils again. And very quickly too (but then, I always did work at speed!) It's being helped by the injections of G-CSF, but that isn't what's causing the increasing counts, that's all him.
This is the first hurdle over - there are still plenty of things that can go wrong. The next potential problem is GvHD (graft versus host disease) which can be very nasty. However, the team is so pleased with how things are going that as long as nothing negative happens in the next couple of days, Kai can come home on Friday.
For the next few months we'll be at the day unit at least twice a week for check ups and reviews of meds - and he'll have to take penicillin for the rest of his life as his spleen won't be working properly (I didn't quite catch why, will try to find out) and certainly for the next year he'll be on a variety of different drugs. However, so far it's all good. Please keep the positive vibes/'fluences/wishes going, it's all helping!
... not sure now whether to go sit on the bench at the top of the garden and cry a year's worth of held-back tears or run around the house screaming... Ah, actually, I don't have time for either, need to carry on upstairs. I've now got five days less time than I was expecting to get the room ready and everything scrubbed and sterilised again...
Sunday, September 14, 2014
Room 12's shower drain was blocked: they improvised and built a towel fort around it so he could shower, but all the same... and today when I arrived he was sitting in rm 4 while they had an engineer in to sort out the plumbing as the loo was playing up too. [sigh] It's the building's infrastructure: the day unit is all new and everything in the BHOC has been upgraded, but the plumbing systems are older and they aren't fully up to the job of coping with the current use, and it's not the sort of thing that can be quickly fixed.
He's back in rm 12 now, hopefully with the problems solved and the room deep cleaned. He's aching (prob the result of the G-CSF they're giving him) and generally feeling awful, and on Wednesday (I think it was, the days are just running together now) he had his first reaction to a blood transfusion - swollen lips and eyes and a rash. Not as bad as the platelets reaction but still frightening. It may just have been that one unit: he's been OK since but they are giving piriton and a half dose of hydro-cortisone before blood as well as before platelets now. If it happens again they'll move him onto washed blood (I had no idea that could be a thing but Kai tells me if it contains protein, it can be washed). That procedure takes as long as washing platelets though - min four hours - so we're keeping fingers crossed it was just a one off.
Overall, however, the whole thing could have been much worse. They've told us this week is the absolute earliest we could expect to see any improvement, so will report back as and when.
The view from rm 12's window.
At home I've finished the painting in the small room and we're moved in (the bed is the other way around from the large room and I didn't sleep at all well last night, kept feeling like I was falling out!) and the large room is slowly taking shape. All Kai's stuff is in there, and tomorrow I start painting the teal wall pale blue, so it's all light and airy in there. I still have to sew the wardrobe curtains, oh joy... He's going to treat himself to a new and decent desk - possibly a corner one, he likes those - once I've measured up the available space. So that project is coming together nicely.
Flowering lithops ('living stones'). Cute little succulents.
Tired and hoping for an earlyish night...
Tuesday, September 09, 2014
Checking in briefly - please assume that if I don't post, everything is just trundling on and we're still waiting to see what happens...
After I left today Kai's en suite plumbing went up the creek again and he's now in room 12. Hopefully to stay. That room has a lovely view out to Dundry and better wi-fi!
Saturday, September 06, 2014
All Kai wants to do right now is get through this couple of days of cyclophosphamide: he can't eat (is having build up drinks instead) and feels thoroughly miserable. It finishes tonight, I think, then he's onto tacrolimus, which - fingers tightly crossed - won't affect him so badly. He's been prescribed codeine now for the pain in his neck at the incision site: it really hurts to move...
After finding a (licked clean) KFC box in the garden a few days ago, this in the honeysuckle plantpot by the front door, and one of Qyun's old balls moved from the meadow to the rockery, we've decided that the foxes aren't bringing us presents: they're leaving their toys strewn around their safespace!
Friday, September 05, 2014
This is the three lumen central line. It's inserted through an incision over the jugular (it'll be about a week before the stitches come out). See why it terrifies me?
Afterwards Kai was feeling fine. Then they put the next lot of chemo through and fine was replaced by awful again...
Thursday, September 04, 2014
It's been a hell of a day.
Had to pick up more pale blue paint before heading into the BHOC, so it was with a heavy rucksack I got out of the lift and was nearly bowled over by the smell. The end of the ward, where Kai is, had a severe plumbing problem - and by severe I mean Kai couldn't use his en suite as there was raw sewage coming up out of the shower drainage hole...
Everyone was running round panicking, getting services in to sort it out and shifting patients into clean safe rooms. I helped Kai's nurse move him up to room 16 (colder, but larger and with a nicer view): we shifted the furniture first then she took him up in a wheelchair (he was white as the proverbial sheet and shaking like the proverbial leaf, right in the middle of a cytokine attack) and got him dosed up with parrots and an anti-bio going through. It took half an hour but he finally stopped shaking and started feeling a bit better, and says on skype now that he's feeling better again, for now at any rate.
He slept a lot of the afternoon - didn't get much last night - which helped, I think. Tomorrow he's being fitted with a central line, and they want him to have platelets first - only he can't take hydro-cortisone for another four or five days. I think they're keeping epinephrine on hand in case of a reaction, but I plan to be there early so I can keep an eye on him.
Wednesday, September 03, 2014
Quick update, very tired.
Kai woke up about 2 am feeling like he had flu - yep, cytokine storm, though more of a shower than a storm, so far anyway. He's achey and miserable, but his temperature and BP are normal (though his pulse was very fast: they took an ecg to check there was no underlying problem). It's worse than he was hoping but a lot better than it could be, so far. He's taking parrots and has had anti-bios, and is spending a lot of time asleep or dozing, which is probably the best way to cope, sleep through it. His appetite is OK so far.
Back in tomorrow - will report back later.
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.