A “quiet” weekend away

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Do you notice anything missing from the photos above? Children!
We have been on a quiet, child-free weekend away that has cost pain and tears.
Firstly the pain. Our brother-in-law, Andrew, did a sponsored triathlon and gave us all the money he raised to spend as we wished. He said we could give it to charity but he thought we should treat ourselves. His mates sponsored him properly so that we was incentivised to push himself to the limit and he broke his own personal record. Massive thanks to Andrew, he doesn’t read the blog, but all the same.
So we had the funds in place for our weekend. We just needed to get childcare in place. Now this ain’t so easy, looking after AJ isn’t just another babysitting job. We need someone who can spot if something is wrong and able to administer the medicines. Luckily Michelle was available. Michelle is a highly experienced child carer, who looked after us when AJ was tiny and going through her heart op. Perfect! Except… Come Thursday Michelle had a bug and we couldn’t risk AJ catching anything.
It looked like we weren’t going anywhere. That’s when the tears came. But Fo was determined, her old friend Frankie was over from South Africa, and she needed to go, so she rang round and got… Holly! Perfect! She was AJ’s key worker at nursery and now a trained physiotherapist, so could even put AJ through her paces. Holly came over, learnt the ropes, popped back to hers in the next door village to get her stuff… And fell down the stairs! Suspected broken ankle and on way to A&E. More pain, poor Holly.
But then my mother stepped in to do her fairy godmother act “You shall go to Gloucestershire!” We decided that she would see how she got on and we could come back if necessary. Otto’s mate William and his Dad Alan came over so he was busy for a bit. But it was always in the back of our minds that we couldn’t fully chill in case Mum needed help. But then Mary, my sister and her daughter Guin came down from Notts and we knew all would be well. Gin and tonics all round!
So our weekend did happen, we had pub dinner with Frankie, her Mum and some mates on Friday. Stayed in Archie’s pub for a couple of nights. The Swan in Swinbrook, I’d highly recommend it if you are after a place to stay in the Cotswolds and want to eat well. And the pub has a Mitford Sisters theme, if that is what rocks your boat.
We went for a walk. It is amazing the ground you can cover if you are without children! Our room’s welcome pack described it as “The most spectacular walk in England” which is a pretty high claim but it was scenic, see pics above. We didn’t find the Escheresque stream that appears to run uphill, which is a shame because I was keen to get the expression “Escheresque” into my blog (do you see what I did there!?)
We watched The Ladykillers in bed, the original version. Had a great meal with fine wine. All topped off with a lie in.
So 1 triathlon and 2 carers down, we did get the weekend we were after. Thanks to all who contributed to it or tried to!
AJ starts, what we hope will be her last round of chemotherapy tomorrow. One last push. All fingers crossed, prayers said, good vibes sent, please!

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The cousins playing trains

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iPads or magazines

I am not going to make the mistake of tempting fate with another “No news is good news” post as the last one was followed by high temperatures and low platelets. Suffice it to say that AJ and I have been making videos.

I saw this video of a very cute girl being filmed by Dad who is obviously another smug iPad owner. We all are smug, it comes with the territory and Apple users inherent smugness has been multiplied by the recent Blackberry outage.

http://youtu.be/aXV-yaFmQNk

 

The video is called “A Magazine Is an iPad That Does Not Work”, which gives an idea of the thrust of the argument.

But… That got me thinking. AJ is nuts about the iPad and has an app library of her own. She swipes and taps. I am in digital publishing and am very fond of my iPad but I still read books, newspapers and magazines and so does AJ. So AJ and I made a video response.

http://www.youtube.com/watch?v=CvP7VqYtfyI

 

Gulp

My lord, my wife is competent. She has just administered her first solo antibiotics treatment up AJ’s Hickman line. This is perilous. She has been through three days training, the nurses are confident she can do it (I checked!) and we are back home. Fo fully primed with all sorts of vials, syringes, swabs… the accouterments of her new profession, she is virtually a nurse. Alright, a bit over the top, but it is a quite hairy, as you have to mix up various powders and liquids. And flush her line out and then push the mixture correctly down her line. As her line goes straight to her heart, you need to do it nice and slowly. If you shoved it all in at once, that heartbeat could direct it all towards one part of your body. So you could have very well protected toes but the rest would be a bit vulnerable. I am on hand to provide emotional support and I did a clamp, woo! I certainly wouldn’t be doing it but Fo is well up to the job and we get to have AJ home. BTW: for the smuttier-minded of you, we have not got her an Ann Summers nurses outfit!

The backstory here is that towards the end of last week. AJ started going down hill. As I wrote my last optimistic post, I felt that it could all go horribly wrong… AJ got a temperature that night and Fo took  her in and there she has been til today. She had one or maybe two mysterious bugs and a platelet count of 1. You should have 150. I think this is 1 in a given volume of blood, rather than 1 in your whole body. Fo and I had visions of the Billy-no-mates of the plasma ocean – the solitary platelet afloat in a sea of red.

It is dreadful to see her when she is unwell because she is so patently unwell. I wasn’t with her for most of these last few days in hospital and I find that being away from her is worse. The nurses and docs sort her out pretty quickly, a quick blood transfusion here,  a few antibiotics there and she is back to her perky self in no time. But if you are not with her, you don’t see this and you are left with images of a downbeaten little girl being whisked back to hospital. And your worries. Add a few drops of work stress and a pinch of Otto being a five year-old and I have been a bit tense these last few days! Luckily had lots of family around helping out, feeding us and keeping us company. Molly and Toby go back to Oz tomorrow, we lose our nanny. I might have to look after my own children, oh god!

Twiglets from heaven

We received a bumper box of Twiglets in the post from United Biscuits, saying they’d heard that they were AJ’s favourite snack. They heard this from a Mel, Tiggy and Maisie, I don’t think I know any Tiggies, so think it must be Tiger, if so, please step forward you guys and thanks that was brilliant. Will try to upload a carousel of photos of AJ diving into her Twiglets box (don’t tell United Biscuits, but she is now rather more partial to a Quaver and they are made by Walkers).

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No News is good news (for now)

No news is good news, as they say and we have little to report after 10 days or so at home since AJ’s last treatment. The days after that she had taken a real knock, the docs weren’t sure if it was post-chemo grottiness or a bug. They kept her in for a few days and then let us go home and here we have been ever since… Until tonight… She had a bit of a temperature so I am hovering with a thermometer and Fo has packed her hospital bag. It was coming down last time I checked and we are hoping.
AJ has been in absolute heaven as her cousin Molly is over from Australia. Molly knew we needed her here and insisted on coming with my brother. So we have had an amazing few family days with my sister and her daughter Guinevere down too. I had a weekend of watching rugby early in the morning with my big brother, eating and drinking far too much. So a weekend of normality, playing with the kids rather than just worrying about AJ.
And for tomorrow evening we have pizzas and pop corn for a full family Revenge of the Sith session. Otto has stoically born an unfortunate series of failed attempts to watch the only Star Wars film he hasn’t seen yet. He got one copy that froze 10 mins in and the next one we found in the hospital had the wrong film in it. But Uncle Andrew (not Auntie Mary, but that’s another story!) has got us a functioning film and that’s the plan for tomorrow. It’s the most frightening film, when Anakin becomes Darth Vader, i hope it doesn’t screw with his head. He has seen some pretty strong stuff for a five year old, Avatar, Dr Who and is only freaked by a few things. Though this week will be a good test of whether this will make any lasting damage. We had unkillable, skull-faced beings from the land of the dead in Merlin yesterday. We just hit the first encounter with a Dementor in the Harry Potter we are reading today. And mutation of an essentially good boy into the living embodiment of evil tomorrow. If that lot doesn’t tip him over the edge, nothing will!
(note to social services: this is a joke, he will be absolutely fine)

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AJ back amongst her own toys