The Worst of Times?

Right now it feels like we are living through the worst of what has been a bad run.

AJ is at a very low ebb. She can move her right hand and right leg but for some reason doesn’t. She is very protective of her right hand and has it permanently curled up into a little fist. If you try to hold it she will move your hand away with her left hand. Her vision is also not working properly. You have to get close up to her before she really is aware of your presence. And she has changed in temperament, she wails in a way that she never has done before. As she has no ability to amuse herself, she gets bored very quickly if she is not getting any attention. She has started waking up in the middle of the night or early, early morning, which explains why this is the first post that I am writing in the morning – I was up at 4am, gave her milk, breakfast, cuddles until she went back to sleep, cleaned the kitchen, Otto and Fo still in bed, so why not write? We have been very lucky with both our kids and their sleeping patterns so this sleep deprivation is a novelty and about as welcome as a novelty tie for Xmas. She tends to slump most of the time as she has lost her sense of balance and can’t use her right limbs to help herself sit up and, of course, she can’t crawl. So she has the abilities and sleep pattern of a six-month old but the weight and consciousness of a two-year old, which is really hard for her, and for us.

It is very difficult to diagnose what is making AJ wail: pain, tiredness, frustration, boredom, a combination of all of these, who knows? All we know is that someone who has the natural disposition of a puppy on ecstasy suddenly finds it hard to smile. We are all slowly learning how to make her happy. Otto can still be guaranteed to raise a grin, she gets the giggles from tickles and goes mental in the bath. I think that she is also slowly learning how to cope. I don’t think that she has improved since we were discharged but she has had a go at kicking around with her right leg in the bath, to better splash Otto. She will let you hold both her hands for “Row the Boat” and is becoming used to feeling around her tray for stray Quavers or Twiglets.

I suppose this should be something to hold on to. That, if she doesn’t get any worse, she will learn to adapt and her system will probably also adapt to compensate. But as we still do not know what is wrong with her so we don’t know if it will get better or worse… or stay the same. We do not know if it is something permanent or transitory. This is what is so difficult to deal with… the future. Should we be preparing ourselves for a lifetime of caring for someone with serious incapacities or weathering a storm that will blow over? We have already had to discuss rethinking her schooling, she was going to go back to nursery around Easter with a hope that she could start pre-school in September. We have always hope that she could do at least some time in mainstream school and not need to spend too much time in special school, which would be standard for a reasonably together kid with Down’s. This new thing will set her back considerably, especially as it has seemed to have hot her confidence so hard.

Oooh, it would appear that early morning blogging is fairly gloomy. It would be a lie to place all the blame for my gloominess at the feet of the clock. We did have a great Xmas and it was so much better being at home than being at hospital. The efforts everyone goes to to make it fun for the kids is wonderful, but I was finding it increasingly difficult to summon Christmas good cheer and had to bite my tongue on more than one occasion when someone wished me a Happy Christmas.

All Fo’s family came for a great feed. AJ is undoubtedly stimulated by having people around and her six year old cousin, Eloise, patiently fed her her breakfast Boxing Day morning. We had my sister and her family for a couple of days to keep us all company. We have eaten, drunk and been merry as much as we can. We are feeling a long way from my brother and his family in Australia. We had a visit from Josh and his mum earlier this month and it meant the world to us to see them. Josh is the eldest of the cousins and is revered by Otto so it was awesome to see them again and for Josh to be able to hold AJ. I will post the photos below as I am massively proud of what a kind and handsome young man he is, plus you can see his ear ring, good to get that out on the World Wide Web (yes, I am so immature that I still like winding up my big bro even if only vicariously these days!)

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Ah well, off to the pub later, so might update at around midnight with alcohol-induced good cheer, that is what it is all about right? My detox will kick in soon! Have started with the question of my reading matter. After six months of reading my fantasy saga “A Song of Ice and Fire” I have decided to cleanse myself for the new year and requested some weighty tomes for Xmas. I have duly received the latest offerings from Norman Davies, Steven Pinker and John Julius Norwich, which should keep me quiet for a while! Though I might tumble of the wagon come February and sneak back George RR Martin for the final instalment for more swords and sorcery.

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Home for Xmas

1-17 Stop the Cavalry

I haven’t worked out how to make music play as you read, but if you right click on the link above and choose Open link in new tab you can listen to the song as you read the blog, which is the desired effect!!

Some appropriate music to accompany the blog

And some imagery to accompany the music to accompany the blog

So we are home for Christmas. But it has more the feel of a Christmas truce in the trenches than an end to the war.

We’ve been sent home basically on the basis that there is little point being in hospital if no one knows what is wrong with you and so, therefore, does not know how to treat you. You might as well be at home with your family being cuddled.

AJ has had the full force of medical science thrown at her. She has had extensive tests that look like a game of TLA Bingo – EEGs, ERGs, EMGs, MRIs. We have had multiple visits from the most eminent sounding people – a very tall professor of infectious diseases, a doctor of neurology who sent a second doctor for a second opinion and then a third doctor for a third opinion, each seemingly wiser than the next. Every time a neurologist sees her they bang all of her joints to check her reflexes, every time they say the same thing “Bit slow, but that’ll be the Down’s.” The top paediatric eye guy turned up with a host of minions all of whom whipped out a torch to peer into AJ’s eyes. We have had to sit in darkened rooms with AJ’s head wired up while being flashed with a strobe, desperately feeding her Quavers… twice, hoping that the Quavers will distract her enough for the readings to be valid and not have to come back for a third.

And the results of all the above… Nada, Zilch, Nul Points. The only thing that is wrong with her is what is obviously wrong with her, something that I can see, all the nurses can see, Otto can see: she is not herself. She can’t move half her body and she can’t see properly and she is pissed off about both of these facts… And she is knackered; she sleeps and sleeps. So all we can do is wait and see how things evolve and we might as well be at home for a bit as to be in the hospital.

Some of the tests that have been done will take a while to analyse. They are now testing for off-the-wall stuff. Things that might not be related to leukaemia, chemotherapy or Down’s. One doctor did say “It could be X but that would be very unlucky.” I pointed out that considering the run that we have had we should not count out lighting striking twice… Or for a fifth time, in actual fact, in our case.

So we are in limbo – she might get better and return to the AJ of old, she might stay as she is and we’d have to reassess living with someone who was tinsy bit disabled to someone who really is disabled… or she could get worse and that would be… What?

We tried to give ourselves until to Easter to really start to think and talk about the future. This lasted about half an hour. She has been happier just not being poked and prodded and she has had moments of giggling and kissing as before, she just needs very close attention. I think that as she can’t see well and her nerves aren’t working properly you need to be up close to her and playing quite intensively for it to register but when it does she loves it.

Christmas on a Cancer Ward

We have escaped actual Christmas day on our ward, I imagine it will be quite bleak. The run up to Christmas has involved much jollity. We have had so many Santas visiting that Otto has started rating their authenticity. So far the RAF one has got top marks. The car club of Oxford did a convoy drive to the hospital bearing gifts. Not to be outdone (but, sadly being so) the bikers club of Oxford also did a convoy bearing gifts. Though, presumably out of consideration for weight limitations most of the bikers’ presents were of a fluffy nature. We have also had Oxford United visit. I had a very nice chat to the Captain, Jake Wright, I very innocently remarked on the complete box set of Ben 10 Alien Force thinking maybe his five-year old , like my five-year old would love them and he gave them to me. I vaguely recognised one of the players, Adam one of the kids, told me it was Michael Duberry… and that he didn’t have a very nice face. How the mighty have fallen.

And to top it off yesterday we had a visit from Dick and Dom… Yes, the Dick and Dom – this will mean loads to some of you: those younger than twenty or those with children younger than twenty who watch British TV, to anyone else… perdon. Otto was very excited about seeing Dick and Dom, they were great and had a very high rent Santa. Though the Scrooge in me did wonder whether at Great Ormond Street you’d get Chelsea and Ant and Dec.

But it is very sad. There are people there looking at their second Christmas on Kamran’s Ward, wanting to avoid a hospital turkey dinner at all costs or some stunned new arrivals trying to find their bearings amid a flurry of present bearers and nurses wearing tinsel.

But we are home and we have got a fuck off great big tree, see below. We have got a fridge full of food, presents under the tree and family on the way. We’ll have fun and see what awaits.

This has been quite a long post. I hope the football truce reference made sense – one Xmas at the beginning of World War One, German and English soldiers, called over to each, sang carols and possibly played a game of football. The Jonah Lewie song felt like a good accompaniment to the general war zone that it feels we are living in. So…

Dabi-dabi-dabi-dom, dabi-dom-dom, dabi-dabi-dabi-dom

…and merry Christmas one and all, no really.

Where we are now, week before Xmas

I hadn’t appreciated the extent to which AJ’s good humour had got me through this whole experience. However grim you might have been feeling, her smiles, waves and kisses made it impossible to really fall into the mire of despond. But now that AJ herself is so downcast, I realise how much she had carried us through to this point. All through the chemotherapy she has developed as much as any child. She can’t talk but she has got a wide vocabulary in sign language. She can’t walk but she can crawl at high speed. She asserts herself very forcefully at mealtimes and feeding herself is a statement of self that shows her determination never to be underestimated.
Ever increasingly she had been blowing apart my preconceived stereotypes of what Down’s people were like. She was never going to be someone sitting meekly in a corner.
Then all of a sudden she has been hit by something that has knocked her completely sideways. Her right leg does not bend comfortably. She can’t control her right hand at all. Something is up with her vision. So she can’t crawl, can’t do any of her signs that require two hands, can’t feed herself. All the things that she was just getting a grip of have suddenly been put beyond her grasp. And she is really pissed off.
Added to this she has spent more days than not nil-by-mouth. She has needed various scans that require her to be under anaesthetic and has had to have permanent intravenous lines reinstated. Yesterday she was lined up to have an MRI scan in the afternoon, which means that she can’t have anything to eat or drink from the moment she wakes up. This becomes increasingly annoying and she begins to wail in a way that she has never before. We spend the morning waiting for news, suddenly we are told we are going for a different scan for her eyes. We get locked away in a room with a strobe, AJ screaming all the time, which probably invalidates the results. Get called for the MRI, so cannot complete the eyes test. Run to the MRI only to be told that there was a miscommunication and that there could never have been an MRI as there was no anaesthetist. Now, as you know, I am a big fan of the NHS, but… But actually we have all fucked up and I have sent many a book to press with errors.
But it did mean that we had to repeat the whole process again today. A process that no one expects will reveal anything.

I have posted previously about the concept of the smug police. It is when you are feeling somewhat self-satisfied about the fact that your child gets to sleep, then they scream all night. This is a rap on the shoulder from the smug police to remind that you should never sit on your laurels and think that you have the whole parenting thing mastered.
I think we have met the smug paramilitaries. We thought we had escaped Downs+, you can get Downs+epilepsy, Downs+autism (particularly cruel, when fellow feeling is a definite plus of having that extra chromosome). We had a Downs girl who was incredibly sparky and could light up anyone she met. Do we anymore? It really would be a waterboarding from the smug paramilitaries if she wasn’t to get over this.
But a shout to Otto. An evening with him can make all the difference. After days of stress at the hospital, I have been talking rubbish with Otto for the last eight hours and feel thoroughly refreshed. He proudly showed me the Christmas tree that he had decorated with the Eloise and Connie, the cousins. Thanks to its fairly wild origins, the tree has three ends, all with angels on them. Otto pointed out that “The one hat doesn’t really look like an angel is my one.” He has got all his father’s arts and crafts skills.
He and I are going into hospital tomorrow, he has got to see his sister and is missing her loads. He will be the best therapy possible for her. Hopefully we can have a weekend together where she is not being poked and prodded too much. Then face the week ahead: Christmas at home with all the family… Christmas in the hospital canteen. Hey, we never like the easy choices us Baxters.
quick update on post
It is 22.45. I hear the music of the accordion coming loudly from upstairs. I stomp up to remonstrate. Otto says “I want to learn French”. He has found himself a teach yourself French cassette… What can you say?
a random, and quite old couple of pictures of Otto by my aunt Paula.

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A picture is worth a thousand words

She has got a cannula in her head! This was to anaesthetise her so they could put a tube in her groin to give her medicines that might work.
AJ’s face says it all, she is fed up, we are fed up. They still don’t know what it is but it is not getting worse.
On the plus side. Christmas on a cancer ward has its rewards. We had a big party and Santa came. The RAF delivered another Santa this morning by helicopter with a load of presents. We had another Santa from the local car club at the weekend. And this afternoon the Oxford United team turned up bearing gifts, none dressed as Santa admittedly. Though someone was dressed as an Ox, the mascot… Of course! So we have got lots of presents and an invite to see Oxford play, in a box! But not against Swindon, as that is the big local derby… Shucks! All we really want is to know what is up with AJ.
a picture of AJ looking thoroughly fed up with cannula in head and one of Otto in Harry Potter make up just before much debated facial scrub

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This is really a hard time. Not knowing what is wrong is horrible. We are in good hands but it is very troubling when the doctors don’t know what is up. We had the top paediatric neurologist at the John Radcliffe round and he said “I am puzzled” and I was thinking “Please don’t be troubled, tell me what is up and what you are going to do about it”. The positive spin is that they have tested for all the worst things it could be and is doesn’t seem to be any of those. So while it walks like a stroke and quacks like a stroke, it isn’t a stroke. It isn’t epilepsy and probably not a return of leukaemia. They hope it is some sort of virus that will go away. So we hope.

Quick update

so it is not a thrombosis or stroke, in fact they do not know what it is. Tricky dilemma: is it better to know it isn’t something ghastly or to not know what it is. Who knows? All I know is that I hate seeing like this and not knowing what to do to help.
She is obviously not right, we have had her regular docs perplexed, had a paediatric neurologist to check her out. She had a proper MRI scan, which showed nothing. Her bloods are in particularly good shape. She hasn’t got a temperature or being sick. She is eating. She has spent two days nil-by-mouth for most of the day, which is never going to help. But she is wobbly and has far-away eyes. She still tries to grin and wave but her heart isn’t as much in it as usual.
It’s horrible.
On the plus side we managed to shove her face in front of cameras to kick start her media career.

AJ in toy story

A stroke (as in thrombosis, not what you do to a pussycat)

So, yes, Ava-Jane has had some sort of stroke. She still needs to go through quite a few checks, scans, etc but it would appear that there is a blood clot spinning around her system and not doing her any good at all.
We noticed that she lost the ability to crawl a few days ago. She seemed to lurch into the floor or shuffle along on her bum. She’d hurt her leg playing around on the sofa and we thought it might have been that, took her to the doc who gave her the all clear. But she wasn’t right, Fo took her to Aylesbury and they x-rayed her to see if she had a broken hand. But she also had a droopy mouth and when I got back, I put “stroke + leukaemia” into Google and not much came up, then I tried “stroke + chemotherapy”, Google did its thing and came up with thousands of results. In fact I’ll do it to see how many… Oh Google on iPad doesn’t display the number of related links, it was always a fairly irrelevant stat.
It does trouble me that they had Fo waiting around all day, doing x-rays when AJ was showing classic symptoms of a well-known side effect of the treatment she had just had. Admittedly we hadn’t read the small print in the info on her chemo drugs we had been given. But once we did, it was quite clear that this is something that can happen but it shouldn’t take me Googling to work it out.
We phoned the JR and I took her in so they could keep an eye on her. She has had a CAT scan, and eco something for her heart and is having an MRI scan tomorrow.
Their most likely diagnosis is that there is a blood clot that formed after her line was taken out and bits of it are travelling around her. One bit got to her brain and as it squiggled around up there it switched bits off, which explains that at one stage her leg didn’t work, then her hand, then her mouth.
The good news is that if this prognosis is right, it is relatively easy to treat with blood thinners. The bad news is that any damage to her brain will be permanent. People always talk about “permanent” brain damage, but I think the fact is that there isn’t any other sort of brain damage. (as ever my medical asides come with a health warning about my lack of any real understanding of the vagaries of the science of the human mechanism). But brains are, naturally, clever things and they can rewire themselves and young brains are better at it than older brains. There is some good stuff on this written by Steven Pinker in The Language Instinct and The Stuff of Thought about how brain damage can knock out certain verbal abilities – vocabulary, grammar and so on – and about how the younger you are the more likely you are to be able to get over it.
So there’s another challenge for AJ: now rewire your brain… with Down’s. I am sure she will.

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Is this it?

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It seems as if we have come to the end of something. I don’t think we will ever be able to completely relax and think it will never return but this whole is done.
Ava-Jane had finished chemo a few weeks ago, had her lines taken out on Tuesday and her defences are slowly building up. I gave her her first bath today without her wigglies in and so could have more than about an inch of water.
What these consisted of was a plastic tube that was inserted into her chest around the height of a nipple and it would its way towards her heart, you could feel it under her skin. On the outside the tube divided into two and ended in sections that could plug into syringes, with great big clips to stop fluids going one way or another. The ends of the wigglies were kept in a wiggly bag, which couldn’t get wet, hence the shallow baths. I always got a major fear when AJ and Otto were ragging that they would get yanked out… “Look Daddy she loves it when I just flip her over!” …”err yes she does but, please make it a gentle flip.” BTW, wigglies is not our term, it how they are referred to in hospital to make them appear less threatening.
She is no longer taking any medicines, which gets me off the late night dose I had to give her and often nearly missed by dropping off on the sofa. She smells like a little girl again rather than a chemical waste dump.
So that might be that. Not sure where to go with this blog. In fact in feels a bit odd to be blogging, this is not something I did in my normal life, so if my life is back to normal again, should I be blogging at all?
however, I am sure that AJ’s progress will be interesting. We might be over the leukaemia but we have got a lifetime of Down’s to face. And to be quite honest after leukaemia and AJ’s heart problem Down’s feels like a walk in the park.
There is something truly unique about Ava-Jane, she has something that touches people. My Aunt Paula described it as being like a dolphin, in that no-one can help smiling at a dolphin.
The pictures of Ava-Jane and her cousin Guinevere were taken by my Paula and I think I will try to post a few of the ones she took as they are great. And then have got pictures of Otto and Ava-Jane and one of the tapas meal I prepared for Fo to represent domestic bliss, and to revel in smugness…let smugness abound Mary! FYI, for those that missed it, that was a ref to early 80s, post punk outfit Splodgenessabound, of “Two Pints of Lager and a Bad of Crisps Please” one-hit-wonder fame.

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