Last BMT clinic of the year - and Prof Marks is very happy. Kai's blood counts are up again, he is now off the itraconasole, and we have to halve the MMF every two weeks over the next six, then stop. He only needs to go for blood reviews every two weeks from now on (unless anything happens, of course, there's a very nasty respiratory virus doing the rounds that has landed two BHOC patients in intensive care... and the MMF has been keeping GvHD at bay, so any rashes and we're to contact them right away) and his next BMT clinic is in six weeks (Day +172)!

All in all - bearing in mind things could still go wrong - a very happy end to what, with the notable exception of the transplant working, has been an absolute bugger of a year. Please let 2015 be better.

Labels: Kai, medical matters

It's a bit chilly here at the moment...

Labels: weather

Oddka Salty Caramel Popcorn flavour - whoa Nelly!! *g* It's good!

I now have a recipe for Turkish Delight flavoured vodka, which I shall be trying as soon as I can pick up some good Turkish Delight!

Found at Sains today for £2.10 in their post-xmas sale...

It's a strange design, and will never replace my true mug, but at that price I couldn't leave it behind...

We have foxes still, and Kai has done two nights of filming them, but the software he used to use for creating compilations doesn't work on his new machine, so he can't post them yet. The foxes are beautiful though. And extremely noisy!

Labels: drinks, foxes, Transformers

Mmmmmm(melting)... Made myself an Options orange hot chocolate drink - then added a measure of Cointreau and a big dollop of Sains Taste the Difference thick cream with Mandarin and Valencia orange and Grand Marnier liqueur. I can tell one is never going to be enough...

Yesterday was also very pleasant - calm and relaxing. I did have to nip to Sains for bread and milk, but apart from that we had the usual buffet, then extremely tasty roast beef for dinner. And watched Dawn of the Planet of the Apes, which was quite good.

Today I transformed (and built) my new Starscreams - Ghostscream and Constructoscream...

Constructoscream I actually managed to build myself without Kai's help!

With trademark smirk! (And he does transform to jet mode but it's fiddly. Will try some other time.)

Labels: films, Starscream

Duck is roasting quietly to itself in the oven, sitting in a bath of Hock: the orange and brandy sauce is made and just waiting to have the pan juices added: the veg is prepared. We'll eat, then watch Dr Who, then have dessert, then watch Frozen (finally!)

It's been lovely and relaxed: the presents are fantastic - four Transformers graphic novels to read (Windblade, Drift, Dark Cybertron vol 2, and Autocracy) - Only Lovers Left Alive and Sky to watch, and some Oddka samplers to drink.

[GLOMPS] to GoodTwin and Sue for indulging my Transformers obsession!

Better go start the veg cooking...

Labels: celebrations

Well, my venison casserole was a fail. Ken ate it, Kai and I gave up. The sauce provided smelt very nice, but tasted distinctly of liquorice, which I can't stand, and the meat was dry. I ended up making Kai and I pizza instead! (Think I'll give up on venison, I've never yet managed to cook it successfully...)

Then we watched Snowpiercer... wow. Goes straight up there with Cloud Atlas, The Fountain and Sunshine. Took a few minutes to get going but afterwards... what a film.

Labels: cooking, films

Kai's cell counts were up yesterday, which is great! All is continuing well (still fatigued and feeling rough, but we know that's the meds and until they're reduced all we can do is put up with it and cope as best we can). Though he really doesn't like the pentamidine...

Last time I was in the hospice shop I found a crab for 70p!

A friend for Lutra's cuttlefish. Isn't he cute?

(I'm still on the lookout for a velociraptor plushie, in case anyone finds one. But best to let me see a pic of it first, I'm very fussy about plushies...)

Labels: Kai, medical matters, plushies

And Happy 25th Wedding Anniversary to us!

Ken and went to the Black Castle for lunch - I had two starters (Filo Prawns and Breaded Mushrooms with garlic mayo) and a side of onion rings rather than a main, and very tasty it was too. (Had the Epic Choc-tastic Sundae for dessert. Was very nearly too much!)

My present from Ken:

So cute! I'm not sure I can wear the bracelet any more, there are 40 charms on it now and 10 more waiting: it's less an item of jewellery and more a dangerous personal weapon...

I'm roasting a pork joint on a bed of apples and oranges and cider for dinner. Smelling nice... Afterwards we have Hercules to watch (I was going to wait until the price dropped but soddit...). I'm very tired though, didn't sleep well last night and woke at 5.30 am and couldn't get back to sleep...

Kai is doing very well.

Labels: anniversaries, films, jewellery, Solstice, treats

My chibi Starscream arrived from Hong Kong. Beautiful, sturdy figure with eyes that light up.

Now, 'chibi', by definition, implies 'cute, sweet, awwww-worthy' - but the creator of this has managed to make him look like a malevolent imp.

Cracks me up...

Heh. He's top heavy and refusing to stand up, keeps falling over. Absolutely typical (of the character, I mean, awkward bugger). He's now supported by the long-suffering (blue) Armada Starscream.

Labels: Starscream

Remember that 20 questions game we played at the Black Castle? I remembered what I know it as - Botticelli!

Kai's lung function test yesterday was absolutely fine - I think Dr Lowry described it 100% more than they were expecting. Very good results, anyway. She's also very pleased with the way things are going, which is great!

The itty bitty diddy teeny Tf: Animated Prowl I found on ebay. Isn't he just so cute?

And we're just about ready for Yuletide now...

Labels: medical matters, Transformers Animated

That was an astonishingly busy but enjoyable weekend. GoodTwin and Sue came over on Saturday: we went out to Almondsbury Garden Centre for Aspen and spider substrate so we can repot both Rosa and Feather, and I picked up a couple of Yule presents as well. So many tempting goodies! Came back with Lindt Cointreau bars for both Ken and I (one of my absolute favourites) as a treat. We ate at the Black Castle (peri peri chicken for me, wonderfully hot and spicy) and played one of Sue's fantastic finds, a people-based kind of 20 questions (I know it has a proper name but I just can't remember it...) It was wonderful to see you both again, and I feel thoroughly rejuvenated (and I haven't laughed so much in ages...) Many thanks!

Sunday was its usual manic busyness.

And today... Well, it didn't start off very well, as Ken forgot we had the appt and didn't wake me up until the taxi had arrived. However, the actual appt was quick: we saw the registrar immediately after the bloods were taken, so were home by 9.30. All is good, and we may be able to start reducing the meds very soon. Won't know til the next BMT appt, but we're hopeful.

Best thing is we have our Kai back. Not sure if that 100 days is a psychological thing, but since it's been up he's been getting brighter and more alert, discussing (and arguing) over the sorts of things we used to (science and cosmology, mostly, though anything is fair game!) - back to normal, almost - every day. It's wonderful. It's such a relief. We're still not taking anything for granted, but if things carry on like this he'll be absolutely fine for uni - and a mostly normal life - before next September.

Thank you, everyone, for your 'fluences and good wishes. They've helped.

Labels: Almondsbury Garden Centre, days out, friends, Kai, medical matters

There is no such thing as too many Starscreams...

(The space by Darkscream, right of the top shelf there, is ready for the three new ones coming for Yule - Ghost, Chibi and Constructobot!)

Labels: nope - obsessive..., Starscream, thorough not obsessive

Well, we're at Day +100, and it feels like a milestone, even if it's been a very low-key day. Kai and I watched Transformers: Age of Extinction again this afternoon, and we had steak and chips for dinner with nuked chocolate puds and ice-cream for dessert. All very tasty!

Yesterday's bone marrow aspirate went very well - very quick and even I could tell the difference between the healthy material extracted yesterday and the awful lack of anything useful from the first biopsy he had. We should get the results at next week's BMT clinic, but he's so much better I'm fairly sure they'll tell us it's now normal. Or perhaps I shouldn't say that, I'm terribly afraid of jinxing things... He's still desperately tired, but with everything he's still going through (those meds are brutal) he's entitled!

Annoyingly though, the BMT clinic we should have had yesterday was cancelled - only nobody thought to tell us. Meant we hung around for longer than we needed to. [sigh and eye roll]

My next two new Starscreams have arrived... Teeny tiny Bayverse one...

... and I finally have a transformable G1 version.

And we now have a Venetian blind at the kitchen window. Finally. It's aluminium and reflects both light and heat back into the room - dead snazzy! Kai had to put it onto the brackets for us as the instructions made no sense whatsoever and he is extraordinarily good at solving such problems.

All in all a good day.

Labels: domesticity, Kai, medical matters, Starscream, YAY

Kai's headaches, dizziness and tinnitus have all eased to nothing, and today his weight was up a little bit and so are his counts [phew...], so they're postponing his ENT hearing exam, as at the moment there's no reason for concern (though that might change depending on the MRI results). All told, everyone is very happy with the way things are progressing, Kai is feeling a little better (though still desperately tired, so sleeping a lot), and we're hoping we might be able start reducing meds after Wednesday's clinic. Fingers crossed.

I've been finding new Starscreams...

This Armada one is rather cute! Originally a McDonald's Happy Meal toy, he's on wheels: pull him back and he rushes forwards, and transforms from jet to robot when he hits something (a bit like a botshot).

It would have been really nice if the advent calender had chocolate Autobot and Decepticon brands, but instead it's fairly standard stuff, angels, trees, sledges, and this.

I do rather wonder what elephants have to do with Yule...

Managed a little garden work (deadheading) out the front this morning after we got back. Looks a little tidier now.

Labels: Kai, medical matters, Starscream

Busy as usual. Wednesday's BMT Clinic went OK: Kai's fatigue and loss of appetite isn't unusual, it seems. Advice is to nap when he needs to throughout the day, and to graze - eat little and often. His weight is fairly stable right now, but he can't afford to lose any. His MRI was yesterday late afternoon: result will take a week to ten days.

On the plus side, he's (suddenly) developed an interest in clothes, and I'm now on the lookout for retro styled garments. We've already bought him a very nice trenchcoat (£5 on ebay!), a handful of scarves, and two dark green pure cotton shirts (small, button-down collar) from Sainsbury's new winter range. I'm looking for a couple of v-neck sweaters next (I don't have a specific style in mind but will know it when I see it) and a loose cowl neck one (not so easy). It's back to scouring the charity shops!

(And yes, I know that's inviting 'your mother dresses you funny' jokes, but so far he's loved what I've found.)

Labels: clothes, Kai, medical matters

... but... what??

(The Astronaut's Cookbook: Tales, Recipes, and More looks useful, but not at £92.29 plus another £10.24 p&p!)

Kai still feeling rough. We're to reduce his tacrolimus and he's been changed to an anti-histamine anti-emetic in the hopes that might help.

Put up Yule decorations yesterday...

Labels: ... wut...?, books, Kai, medical matters, strangeness and charm, Yule