We created these Angry Bird pumpkins and took them to the pub to enter them in a competition…
…it turned out that the competition was not for artistic interpretation but for size of pumpkin.
It has been a while since I wrote a blog post. Generally that is good news as this blog very much works on the “no news is good news” approach. However… this time… we have had some more bad news about AJ and I have not been able to summon the energy to write about it.
But it is probably the time to tackle it. AJ had a heart op when she was four months old and during her chemo the docs had been worried that it could deteriorate the surgery so they had been keeping a close eye on it. Happily, the mend bore up sturdily and it was all looking good. Unhappily, something else popped up! So this is one of those “known associated problems” that “very rarely occur” so, as the doc said “she really is very unlucky.”
“Oh aye, we knew that,” said we.
To recap what AJ has had, I will list them as they appeared in a letter we recently received from the docs.
Diagnoses:
1. Down syndrome – we were always cool with that!
2. Complete AVSD, surgical repair September 2009 – first heart op
3. Subaortic stenosis – I really cannot remember what this was and spellcheck doesn’t like it!
4. AML, chemotherapy finished November 2011 – that’s the leukaemia, AML is the nasty one.
5. Unexplained neurological disorder, visual disturbance with pyramidal and extra-pyramidal motor disorder – they say “unexplained”, we say “probably caused by the chemo”
So we had more or less got our heads round that lot. And now she has a “subaortic shelf”. There has been a lot of cod medical interpretation in this blog from my part but allow me some more. A little shelf has started growing into her aorta and it will continue to grow. Now I was never a very diligent student in my science classes but I did take on board that you do want to have a good free flow of blood through your aorta.
So they have got to fix it. This will involve full on open heart surgery. We resolved to ask the doc whether keyhole surgery was at all feasible… So we did… And… No! Not feasible at all.
I do long for the day that AJ has some health problem for which she could just take a couple pills. She does seem to specialise in the drastic ones.
And… Unfortunately (oh yes, I can lay it on; there’s more) they have closed the paediatric heart unit at the JR in Oxford. We are old JR hands – Floor 0 of the Children’s Hospital, turn right for heart problems, turn left for cancer – we knew our way around. But there were problems in the unit just after AJ had her op and just before a friend of ours had his, but that is another story, so they closed it down. “They” are trying to create centres of excellence and centralise complicated medical procedures, so our local centre is in Southampton. Unusually for me, I do not have a strong opinion on this initiative but I do know that Southampton is not very local to us. So we will probably have to decouple from the JR, which has seen us through so much, and go to Great Ormond Street.
And essentially that is one of things that is weird about this one. We seem to have become so inured to AJ going through the wringer that this time feels more procedural. We are focussing on how we can get through it with minimum of disruption to our lives rather than being knocked completely sideways as we have been before. My little girl is going to be cut open… again. It is an absolutely devastating thought but having looked at these terrors before we know we can probably deal with it.
Wordup for Otto. I do worry that he does not get enough of a look in and that our lives, out of necessity have to revolve around AJ but his contribution should never be discounted. Otto is an easy child to have, I obviously wouldn’t want to be the sort of parent to boast about their child so I will not tell of when he did his Roman project home work in Latin (Q: Why did you do it in Latin? A: Because they were Roman, they spoke Latin!) I wouldn’t do that. But what makes him truly special is the way he is with AJ. He has taken to setting her up as an audience so that he can perform plays for her.
Again, I would not like to boast about my children but… I can about AJ… AJ is Mary… In the school play! Yes, get in there, my girl! When Otto heard he said “I-HAVE-GOT-TO-GO!” It will be unmissable. And that is only one of her school plays. I can’t say too much but there are FX in her other one. I saw a rehearsal but Fo is going to the première so no spoilers.
And to end on a very moribund note, I would like to use this space to remember two very dear people to me who we have recently lost: my cousin Angus and my old friend Ruth Gilarranz. Life does sometimes feel very fragile, both these two were amongst the most harmless people imaginable and, like AJ, there does seem to be a certain injustice that they should be the ones to suffer.
Misliterature 