Update on AJ is that she has had a few good days. Being where we are now, the wisest thing is probably to take each day at a time and a good day is better than a bad day and a few good days are better than a few bad days. There has not been any significant recovery of her faculties but she is happier. This probably means that is in less pain and that, for now, is all we could wish for.
She is sleeping fairly normally and was the last one up yesterday. She has been waking up giggling, not screaming. And generally has been a lot more AJ than she has been in a long time.
It would seem that the steroids have helped to at least calm things down, whether they can actually help repair what has already been damaged remains to be seen. Will keep you all posted.
As well as AJ being in a better place, we have also had a good time being looked after by friends and family. Professional respite care will be a great help but the support we have had from our nearest and dearest has been incredible.
On Friday Fo had to go and visit a special primary school and was quite worried about it. You can build up an image of a place like that being a Junior One Flew Over the Cuckoo’s Nest. So Cag’s –her sister went too. It turned out to be an inspirational place that we would love AJ to go to however she ends up.
Then Fo’s old mate Dolly turned up with her daughter to play with Otto and bearing food and wine. She got up in the morning to look after AJ so we could have a lie in. A lie in!!!!
Then my sister came down with cousin Guin and they all looked after AJ with Mum while me, Fo, and Otto went to see The Muppets. I haven’t laughed that much in a film for a long time. As Dr Kermode has said, the difference between The Muppets and a lot of other recent kids’ film, a lot of which are excellent, you don’t have the slapstick jokes for the kids and the knowing jokes for the adults. In something like Shrek you get a load of fart jokes and then some some genre movie references to give the Dads a chortle. In The Muppets, Otto and I were laughing at the same bits… Fo was snoozing!
Finally we all went off to a Sunday lunch with old friends and new, with children swarming everywhere.
So all in all a far finer few days than we have had in a little while. Tomorrow’s another day… Etcetera, etcetera, etcetera.
Cousin Guinevere after some intensive swing action.
I was humming a reggae tune with ‘weeping and wailing’ in it somewhere. I thought it would make good background music to this post. I couldn’t find it but as I was going through my reggae albums, I found this song, which is altogether more uplifting. If anyone knows it, please say, it isn’t the Burning Spear one, I checked!
So AJ’s symptoms have got quite biblical… (Matthew 13:42) Until today, she had a good day today. It was really was wonderful getting home, Otto had his best buddy from school round and family and AJ wasn’t screaming. A semblance of normality.
The last few days have been absolutely dreadful. It is alright for me, I can bounce her around for ten minutes before I go off to work, give her a bath and bounce her a bit more when I get back and she is quite fun. But generally she is weeping and wailing. She has also started grinding her teeth, which puts me on edge because it feels like she is on edge, which she is. Fo has been through days of weeping and wailing and a gnashing of teeth, with visits to hospitals and from assorted visitors.
AJ has now become seriously averse to hospitals, doctors and all the whole shebang. And fair enough. She has always been the easiest patient imaginable. She would swallow anything she was given, wake up in the middle of the night to be chemoed and go back to sleep, wheel into the ward over-excited and waving at all and sundry. But she has had enough and is now manic about going to hospital and being examined. She probably feels that it hasn’t done her any good so far, far from it, so possibly time to give it a rest. And she’d have a point. But we can’t and one good day like today is worth many bad. But as quite a lot of the tests they are doing now are very sensitive brain things, you can’t really be wailing and thrashing about during them.
We have done the first round of steroids and just hoping that they will, at least give her some relief. We have been sorting out relief care for us and have come across charities who can help out. Mum got a flyer from CHAT, with the straplines “Does your child have complex health needs?” “Oh, Yes!” “Are there occasional times when your child requires extra care?” “Yup!” “Could you benefit from short term respite in your own home” “Oh yes, yes, yes, bring it on!”
So without wanting to get too excited, we seem to fit their profile! A very nice lady came to visit and she will be able to spend time with us, so that we can spend time with each other and Otto. For the first time he expressed annoyance at AJ, like us he is finding the constant wailing hard to bear. I think it is very important that we do all we can to make sure he doesn’t begin to resent her. He is her best medicine so we need to keep him on side.
I wrote the above last night but didn’t get round to posting it. This gives me the opportunity to add some pictures I took at breakfast this morning. I am conscious of the fact that I have not been posting as many pics of AJ recently. I think I find it hard as she is just not as photogenic as she once was. I will need to come to terms with this but it may take a while. I had the same problem early on, when I found myself selecting photos of her where she looked least Down’s. But the truth of the matter is that she has got Down’s so there was no point trying to avoid it. Similarly I am going to have to accept that I will not be getting action pics of her crawling around and grinning any time soon.
I’ll come back to Homerian title later but first AJ.
We have found out what she has got but what caused it is still unclear. She has got extensive brain damage in quite a few places. The most likely is that is from the chemo. It can have this effect but typically if it is going to do this, it does it at the start rather than right at the end.
It could still also be some weird brain infection unrelated to anything else she has had. Again the doctor said “But that would be really unlucky,” and again I told him that I would not rule out lack of luck in our case.
She has started on a course of steroids. These should at least help the swelling in her brain so that it would hurt less. The probable reason for her waking up, crying all the time and generally being pissed off is that she has been having headaches. I think we have a lot to learn now about brain damage before we could even possibly be able to start to understand what the long-term outcomes might be.
From very much a standing start – I studied Comparative American Studies and Fo did Geography, we have become quite the medical know alls. So now we have another branch of medicine to explore!
Fo has had a very full on week of hospital visits, solo child care and harsh decisions. I took a couple of days off to help out a bit but had to go to Madrid. So Fo was on her own as we had to decide whether she should start on the steroids or not. They are pretty hardcore and would only help in the case of it being chemo-related, otherwise they will not help at all, quite the reverse.
My trip to Madrid was a bit of nightmare. When I was at OUP I had a string of ill-fated trips abroad but until now have been doing well recently, not this time! I managed to get myself quite sick. Probably ate something dodgy or just things catching up with me after running on empty for a while. This was on Thursday and I still had meetings on Friday, I only managed to make one. I was staying the night with my old friend Edu and a few people came round to see me. All a bit surprised to see me on the water and early to bed… In Madrid!
And then, and then. This afternoon Otto asks to have a play on the iPad, after much rummaging, oh my god! It has gone! This is bad, it is one of the few possessions I really do treasure and I do not even possess it, it belongs to my work! But I don’t panic, look up lost property on easyjet, call the number…
“Oh, yes sir, we have been waiting for you to call.”
It was absolutely brilliant, though Otto did take some convincing that his not being able to play Lego Harry Potter “right now” mattered little in the light of recovering an iPad in what is a harsh, dishonest world, was nothing short of miraculous.
Well a miracle that entailed a two and half hour round trip to Luton. So my planned weekend of bounding home proclaiming, “Honey I am home, you kick back and I will look after the kids.” Turned into “errr… Well I am off back to Luton, you are alright with them for a bit, aren’t you?”
I thought I would have a bit of Bob Dylan singing the blues to counteract the blase optimism of the post title. I’d recommend listening to this song with the volume turned up loud but then again not everyone has my penchant for a bit of Bob.
Yeah so this is a wildly optimistic title for a blog post. There is a very strong argument in favour of me not tempting fate given what we have been through thus far. Though I would say that, on the other hand, we have not just tempted fate but rather fate has not been able to resist temptation whatsoever and already gobbled us up. So we have little to lose by dangling a small morsel of temptation for fate to nibble. Oh, man I have not so much stretched that metaphor but hyperextended it on a lingustic rack… and that one.
AJ has been a little happier for the last couple of days. She is definitely trying to do more stuff. She is trying to crawl and can do left leg, right leg, left arm… hrrrh. That’s the point at which she gets frustrated as she cannot voluntarily move her right arm. She is also insisting on feeding herself more. And getting more accurate at it. I have found it difficult to accept AJ’s passivity as she is basically a pretty ballsy person. And where before she would spurn any food you offered her with a princess-like haughtiness for a while now she has just eaten anything you gave her. Now she just lets you feed her and eating seems to be one of her few enjoyments and one sign that she still does is the one for food. But recently she has been insiting on grabbing the spoon and feeding herself.
She is also really trying to verbalise. We are convinced that she has got a hello, admittedly is it more of a Telly-Tubbies “Eh-Oh” but she says it at the right moment and it is not something that she did before.
It does become increasingly hard to write this blog. I wrote the paragraphs above a couple of days ago and saved them as a draft, to come back to. At that point we had had a couple of good days and now when I return to write we have had a couple of bad days. One of the things that I have found so far with this blog is that it has written itself. People have, very kindly, complimented me on my writing and even suggested that I should do more with my writing and the truth be told I have always wanted to write. But that may or may not be, I don’t, however, think that this blog shows anything about my qualities as a writer as it has needed no imagination whatsoever, this is us and this is our situation. All I have had to do is record the incredible highs and lows of what we have been going through and there I have a story. But recently we haven’t had the ups to contrast with the lows, admittedly the lows are not so low as they have been but the tale of a dull ache can never be as intrinsically interesting as a brush with death and ultimate survival.
And that is what we are living: a dull ache. When we were dealing with leukaemia it was essentially a question of full-on activity which would decide whether she lived or she didn’t. Now it a gradual realisation that this is the way it is going to be and we will have to come to terms with it one way or another. And frankly I am not coming to terms with it very gracefully.
We had a group therapy session the other day. By this I mean a visit by a group of therapists rather than Fo and I are having to resort to professional care …yet! These are AJ’s Occupational, Speech and Physio Therapists who have been looking after her for a long time, well before the leukaemia. They are excellent and know her well. They were helping us get the dials on her chair set so that she would be comfortable and had as much freedom to do the little she can do as easily as possible. They were also helping with feeding. But I found it very disheartening and got quite grumpy, as I felt that all we were doing was tinkering around the edges when there is something fundamentally wrong with AJ and I want to know what it is and whether it is for ever. When previously she had seen the speech therapist, we were looking at ways to get her to use her mouth so that she would be able to speak, now she was having to tell us about how to feed her so that she doesn’t choke. Similarly she had been doing exercises with the physiotherapist to help her learn to walk and now we are looking at ways to stimulate her limbs so that they do not become atrophied.
…so the post title is looking increasingly flimsy, eh!?
Is life entirely negative? No, of course not! AJ is still who she has always been – a fun-loving giggler. She will laugh, she loves her music. She has moved forward in making recognisable sounds. We have each other and we have Otto and all the people around us near and far and we know this more than ever.
Oh Capello has resigned… ‘A seismic shock for the team’… hmmm. I could never warm to a man who has coached Real Madrid twice. Redknapp is off scot free, so there you go. Apologies for the totally random divergence. I was doing research for my mini politico moment to come below, which will be signalled so as to be fully ignorable.
Before I embark on the politics, let me wallow in a bit of Dad smugness. Otto does make me very happy. He donned his Roman armour, told me I could be Julius Caesar and he would be one of my assistant generals. “Mark Anthony?” I asked. “No, Brutus,” he replied. Sorry, but you have got to love a five-year old who has options on which of Caesar’s minions to be.
We went back to the house where Fo was living when I first met her and where we lived when we got married and had Otto. It was an absolutely magical place, we lived in a cottage in the grounds of a manor house. Kyle, the owner grew all sorts of of exotic vegetables and fruit and we had the run of her swimming pool, tennis court and beautiful gardens. It was great to be back and to see Kyle and Robert, the gardener. But the one drawback is that it is on a very steep, north-facing hill (Edgehill, of battle fame), so the snow never melted and we spent many times stuck there. And sure enough, just as we were tucking into pudding the snow started to fall so we decided to beat a hasty retreat. Not before time really as AJ had been wailing through most of lunch.
As I mentioned above I did want to do some research for my little political featurette. I overheard a couple of snippets today, which I felt, juxtaposed, said something. The first was early in the morning and I wanted to listen to it again just to make sure I had heard the guy right and to get his name so as not to refer to him as “some Tory”. And I am so glad that I did, as what he said was beyond preposterous and his name was absolutely glorious – Harry Phibbs from the Daily Mail… Of course he does, he is from the Daily Mail… boom, boom!
He was debating the reforms to the NHS with Alastair Campbell and getting increasingly shrill, as Tories are wont to do when debating with Alastair Campbell, he wound himself up to a crescendo and came out with:
Competition and choice save lives.
…really? (If I had an eye-brow raising emoticon, I would insert it at this point.)
And then later in the day, I was on a train and overheard a ticket collector, or probably to use the more correct title, Train Manager, outlining to a passenger the choices he had to use his ticket to Darlington. If he wanted to go direct to Darlington, he would have to change at Birmingham and get another ticket. This ticket would cost £58 on the platform or £71 on the train. Alternatively, and he did have a choice, if he wanted to use his ticket to Darlington he would have to go via Manchester, which would take and hour longer.
So competition does give us choice, but it does not necessarily offer us the best way to get to Darlington and I doubt very much it will be the best way to deal with chronic disease and run a health service.
Just a thought, I will leave it at that. My word count has gone over 1500, which is probably too long, especially from someone who earlier on had said they were finding it hard to write.
I do hope everyone paused the first song before playing the second. Bob Dylan overlaid with Billy Bragg would be too much even for me!