Gavin: This is not living

Sonny and I went to the RAF museum at Collindale today. Before we go we need to pack boiled water, meds and a crash pack. I took a pair of pants too, just in case. I wheeled him round amongst all the other families who looked guilty when they stepped out of the lift. When Sonny announced he 'was hungry' I shot to the cafe. The lone packet of hula hoops weren't right, so I was then hoping he wanted to leave soon so we could find him something. Tesco's was shut. Waitrose was shut. Sainsbury's on Upper Street was open but didn't quite have what he wanted. We bought some chicken slices and malt loaf. The chicken was wet and he didn't want it, so I cooked him some bacon and he loved it. I melted with relief. He wanted another slice but we knew he'd throw it up so I made an excuse. Zoe was out with Rubes as we need to make sure she's doing normal stuff. This means I don't get to see Zoe for most of the weekend and then it's back to work tomorrow. Now the kids are in bed we're sorting out his drugs and the logistics of getting him to UCH for 8am for his tranfusion. Ruby had diarrhea tonight so we're talking about what we do with that and keeping a watchful eye. We've poured a glass of wine but not too much as the car is packed with his overnight stuff just in case.
I just carried Sonny to bed. His legs are stick thin and his face is white with big red bags under them. He couldn't face cleaning his teeth as his NG tube makes him feel sick and, as he's just had eight syringes of medicine I couldn't risk it. I put his cream on his chest (to stop it flaking through radiotherapy) as he held his Hickman line out of the way. He said 'I had a brilliant day dad' and I said 'Yeah, so did I big man'.
This is not living.

Zoe: Weekend Ranting

Its taken 24 hours of ranting and negotiation to get a blood transfusion organised for Monday at UCH. Sonny's hb needs to be around 12 for radiotherapy and its fallen below 10 so he needs a blood transfusion. However, despite these being pretty routine for us now its been like pulling teeth today to get one organised with UCH (who are presently in charge of his care) not quite grasping 'the child first and always' motto of GOSH. Baring in mind that he's attending hospital 5 days a week it seem a little unfair to drag him into the Whittington on a Sunday for a 6 hour procedure.   Some silly doctor tried to fob Gav off with some idiotic nonsense today hoping that he'd believe his bullshit... oops.

Zoe: Sonny's week in pictures

Gavin: Champions league, you're having a laugh...

Tense? By god it was, but once again, the sheer quality of a side like Arsenal shone through. 16 attempts on goal to Barcelona's zero to me spelled out the result... there was only one team that could win this and with over 70% of possession it became almost embarrassing for our Catalan friends. Who knows who we'll meet next, but we're hoping it's not Bolton or Stoke.
Sonny loved it, sipping coke and even eating a pancake in celebration. He'd also like to say a word for his mum on International Women's day.

Thankyou.

Zoe: Thumbs up

Today was spent updating GOSH and UCH on Sonny's weekend. The good news is that they think his poorly tummy was due to a bug rather than the effects of the radiotherapy, which seeing as he was only two days in would have been a disaster. His NG tube is now firmly back in place too thanks to a visit from the Community Nurse. At UCH the radiotherapists keep apologising for how long its taking and assure us that it will get quicker. This is astounding seeing as the whole thing from parking the car takes less than half an hour from start to finish. Sonny has downloaded some tracks onto his ipod which he now has blaring out whilst he's alone in the DANGER DO NOT ENTER SCARY ROOM FULL OF LASERS whilst I just tap my foot along to the beat watching his thumbs on a tv screen which are the only things he's permitted to move in case of distress.

For a laugh, try not moving a muscle to Hey Ya, by Andre 3000. My kid is incredible.

Zoe: Drum Roll

Round of applause for Sonny.  In spite of having shocking diarrhoea and throwing up his NG tube late this afternoon he's managed to stay at home. It sounds like he's had a terrible day but he really hasn't. Despite all the above he's feeling ok and he's been in really good spirits. We are so relieved that we didn't start the antibiotics. We'd never be so maverick to take any risks with him but I think waiting was a good call last night and we couldn't have done that without the trust of the Whittington. His temperature hasn't gone above 37.6 and as long as we keep on top of his fluids we know he'll be ok. Its tricky being at home when he's so poorly however, we've learnt a lot along the way and know when and when not to panic so for now we are happy muddling through.

Zoe: Saturday Night Fever

Sonny was a little red cheeked when I left the house this morning to begin Ruby's marathon of activities. I got a text from Gav around 4.30pm saying that his temperature was up to 37.7 and he'd had five bouts of diarrhoea. After several phone calls, one of which is now to UCH to add to the complications we decided that we had no option other than to take him to The Whittington to get checked over. Sonny was very upset and even more so when his temperature reached 38.5, the point where a 48hour dose of antibiotics is the only course of action. However, the nurse that took the temperature was a little slack in telling the doctor so by the time things started to get moving I noticed that Sonny had become a little chattier and dare I say it, a tad demanding in his wants from home... The thermometer showed his temp was on the way down and as soon as it got below 38 he was allowed home. And thats where we hope to stay.

Gavin: Quick one

Sonny ate a pancake for breakfast and did alright at Radiotherapy today. Tomorrow I either wheel him to cyber candy on Upper Street and eat posh pancakes in The Diner before coming back to sit on the sofa and watch Soccer Saturday with him or, sort out the loft. Hmmm... it's a tough one.

Gavin: The awfulness of radiotherapy

Me: Hi mate, how was it?
Sonny: Alright actually
Me: Cool, so you weren't worried?
Sonny: No, it was ok. I felt like I was in a transformers movie
Me: Excellent (relieved laughter)... How was being on your own, that was what mum was so worried about?
Sonny: Oh fine, she had some walkie talkie's and she read to me as I can't talk back but I asked her not to do it tomorrow as it was a bit annoying.
Me: Ha ha, nice mate. Love you.
Sonny: Yeah love you too dad... What time you coming home?

Zoe: Tough Times

Sonny spent the day having his three weekly immunoglobulin infusion at The Whittington. Tomorrows treat is a blood transfusion and he begins radiotherapy on Thursday. The whole of Sonny's year group is away having fun at camp this week. Sonny is really sad that he's not there with his mates being a boy, larking around and trying new things for the first time.