I have realised that the About page for this blog doesn’t really describe what it is about. The original About was just about when AJ got diagnosed with leukaemia but then things moved on and we went on our road trip to Budapest. So I updated the About to be about the road trip we were about to set out on. But that was a few years ago, so I think I need to revisit the About! This blog is still mainly about AJ and her various trials and tribulations – there are so many of these that they are best expressed in bullet-point form, which is what I will do below.
But beyond the medical and something that should not be put in a bullet point is just what a wonderful human being my daughter is. She is hilarious, loving, cheeky and the most squidgy and huggable person alive. I can’t pretend to be objective but that is a fact.
So the bullet points:
– 2nd July 2009, Ava-Jane Baxter born
– 3rd July 2009, diagnosed with Down’s Syndrome
– 4th July 2009, diagnosed with serious heart defect
– September 2009, operated for heart defect, full on, open-heart surgery with all her vital functions being performed by machines for the duration of the operation.
– 4th July 2011, diagnosed with leukaemia – two days after birthday, you’ll note…
– July-November 2011, chemotherapy. Really nasty chemo for her really nasty cancer.
– 22nd December 2011, some weird brain thing (still not diagnosed properly) – three days before Christmas, you’ll note…
– Jan-Feb 2012, in screaming agony, loss of ability to move whole right side of body.
– March 2011, stops getting worse but left with no control of right limbs and no balance – no one really knows what is going on but it is probably an allergic reaction to the chemotherapy which caused a swelling in her brain. A treatment of steroids seemed to detain the swelling.
– summer of 2013, we all go off to the Peto neuro clinic in Budapest, which specialises in treating Cerebral Palsy (or “Terrible Palsy” as Otto called it when he was little) – she hasn’t got Cerebral Palsy but there are similarities – great trip – no observable improvement in AJ.
– December 2013, AJ diagnosed with another heart defect – not as bad as the first one, but y’know, more open-heart surgery needed and they have closed the paediatric heart unit in Oxford so it’s off to London to a different hospital.
– 10th February 2013, all packed up to go to London, waiting at train station, get a call telling us operation is postponed… we go home via the zoo.
– 27th February 2013, actually make it to London, AJ has the op and makes a flying recovery – home within the week.
– some years of peace…
– 2016, 2017, 2018… AJ starts developing all sorts of twitches and spasms. They’ll be somehow related to her brain damage but no one is quite sure what they are. They kind of look epileptic, some of them, but then again there’s all sorts of flavours of epilepsy. They give her a cocktail of drugs, some of which work, some of which don’t. The ones that do work, and some of the ones that don’t, make her floppy. She’s got Down’s Syndrome anyway with associated decreased muscle tone, so doesn’t really need any increased floppiness.
– 2nd July 2018, and that’s where we are today. It’s AJ’s birthday. Among Ava-Jane’s many achievements, survival stands out. I made sure to get home in time to put her to bed. The book, bed, milk, or “boo, beh, mi,” as AJ puts it (she tends to be economical in her speech) ritual is the best time of the day. She will never walk and can barely talk and she is nine years old but I can safely say that hanging out with Ava-Jane is one of the greatest pleasures that I, or anyone else for that matter, will ever have. Again, that’s not just me saying that – it’s a fact!
One of the upshots of all this is that I know more about cardiology, neurology and oncology, speech therapy, physiotherapy, occupational therapy, chromosomes and genetics than you might expect of someone with a 2:2 in Comparative American Studies from the University of Warwick.
But the blog isn’t all about Ave, if you read on, you will be treated to occasional rants from me about the unmitigated folly that Brexit is, there’s a yearly ritual of the lambing blog post, when we can all go “aaaah” when they go “baaaah” and if you are really lucky you might have been holding forth on sporting subjects such as the wonders of cricket or why Atlético Madrid are the only decent team to support. So while we are it, let’s go with this. Let me write this down in the indelible ink that is the internet and today, 2nd July 2018, just a day before the round of 16 match against Colombia, I, Luke Baxter, do declare that England are going to win the World Cup. Ha, mad I know and if, in the unlikely event it does happen, I fear it will be a poisoned chalice as it will reinforce every Brexiteers skewed vision of the world with England at its epicentre radiating brilliance to the four corners of the globe (and globes don’t even have corners!)
Enjoy the blog.
Old stuff in italics – preserved like a Roman relic.
The description in italics below is what I wrote almost exactly two years ago, shortly after we found out that AJ had leukaemia. It got worse before it got better. She did recover from the leukaemia but in the process got brain damage from the chemotherapy. It is all in this blog if anyone wants the gruesome details.
She did get better in many ways but has been left withproblems. We are off on a Baxter Family road trip to Budapest to take AJ to The Peto Institute.
The blog has very much been on hold as AJ has improved and there has been less to tell. But I think there might some fun tales to tell as we make our way through Europe. We plan to drive through as many countries as possible both there and on the way back, so chances are we will be up to some nonsense.
Some of the older readers might remember National Lampoon’s European Vacation and I can imagine us getting into scrapes much like the Griswold Family.
So we are off next Friday 12th July and I hope to be updating when possible.
This is a blog about my family and particularly about our daughter/sister, Ava-Jane. She is going through a hard time at the moment.
I hope the blog will be funny, truthful and informative.
I have called it Mis Literature as there does seem to be a tendency for people to record the misery in their lives so I thought I would jump on the bandwagon. I do not think out lives are in the least miserable, in fact I think we are incredibly lucky and have an amazing and cheerful life. But when put down in black and white it does sometimes amaze me some of the crap we have been through and are going through. Ava-Jane getting leukaemia really does feel like a step too far.
She has just turned two, has Down’s Syndrome and had open-heart surgery at four-months old. Chemotherapy on top of all that seems a bit harsh. She is truly a ray of sunshine. She brings a smile to everyone’s face. Does she really deserve this?