Thursday, 31 March 2011

Zoe: Back to school

Sonny's been eating Chinese takeaway for the past week. Last night his fortune cookie was rather profound "A merry heart make good medicine". Earlier that day he'd been given the green light to go back to school to try and rid him of the blues. Sonny's consultant thought long and hard and although it was a bit of a shock as none of his numbers are way high enough he took the view that sometimes you've just got to get on with things. So folks I'm delighted to tell you that Sonny went back to school today. With a woeful platelet count of 8 (normal range is 150-450) he joined his class for the afternoon and absolutely loved it, it was like he'd never been away.

Wednesday, 30 March 2011

Zoe: Really Great Great Ormond Street

Sonny was seen back at the BMT clinic at GOSH today. It felt like he'd been away for ages and although they were all very lovely at UCH it was a relief to be back amongst some familiar faces. Although clinically he seems to be improving theres still plenty to worry about day to day. His blood pressure is way too high and his bloods are very low again despite the transfusion on Friday and additional platelets yesterday which is all a bit mysterious. Its too early for news on how successful his radiotherapy has been and until these results his next course of treatment is still very much open to debate. For now we'll let the doctors battle it out. He's home and happy which'll do for  us.

(Thank your mum for tonights title Louis ;)

Tuesday, 29 March 2011

Gavin: a big night

Sonny has gone to sleep in his own bed tonight as he managed to drink enough to only be on his pump until midnight. This means I get to sleep with zo for the first time in a couple of weeks. I'll miss sleeping with rubes in the spare bed... If nothing else it's a lot easier to get the duvet off her at 4am.
We're waiting it out by watching Lily Allen struggle to open her new shop on TV. To be honest, I feel much more relaxed about our situation now I know she's had to give up a multi-million pound recording lifestyle to piss it away on a folly... Currently she's struggling to get her head around a scotch egg and her sister has lost her 11th phone. That's perspective people.

Monday, 28 March 2011

Zoe: Prawn crackers

Yay, Sonny is starting to feel a bit more like Sonny. He's drinking more and he's even started to eat. Hilariously his tastes are quite peculiar insisting he can only stomach a takeaway chicken chow mein but we don't mind one jot and I'm happily tucking into his left overs as a takeaway is really pushing the boundaries of his post BMT diet to the limit let alone reheating them. Prawn cracker anyone?

Saturday, 26 March 2011

Gavin: Final push

The fantastic people I work with ran a charity event last night in aid of Anthony Nolan, raising £8,000 with a combination of auction, gifts and outright generosity. There are too many people to thank (you know who you are) but it's just fantastic and of course we're all very, very touched.

Andy who is running the marathon (see the post below) alongside Richard, needs to hit his target of £1,700. I have no doubt he'll achieve it, but if you want to help him and haven't already, please click here:

Zoe: New Horizons

Sonny has finished his radiotherapy. The celebrations had to be put on hold as he had to hot foot it to The Whittington for a blood transfusion but who knows... this could be the last one? Its been a gruelling few weeks with the symptoms of his cancer now being overtaken by the side effects of the radiotherapy which may well last for another few weeks. We'd hoped he'd be feeling much better at this stage but he's not really and he's feeling very down in the mouth :( We've been going for lovely walks in the sunshine to cheer ourselves up and it works I tells ya.  

For those of you not from London Village, UCH is the small green tower block above Sonny head. 

Wednesday, 23 March 2011

Sonny & Ruby: Happy 70th Birthday Da!

Tuesday, 22 March 2011

Gavin: Just giving

We've never wanted this blog to be about forcing charity down people's throats and, about a year ago I took the decision not to publicise my Sister's Marathon on here because I thought that this would be over in a few months and despite her huge undertaking of running 26 miles, it didn't really matter as she'd manage it no problem and boys that are only weeks away from getting better don't need charity do they, right?
Wrong. It's difficult to describe the feelings you have when the Anthony Nolan Trust sit you in a room and explain that they're doing everything they can to find a donor but there's no guarantee. It's probably harder to be on the ward with the parents who didn't find a donor to be honest.
Andy Bamford is the Managing Director of ThirtyThree in Bristol and Richard Clark is the Finance Director in London. Both are running the Marathon on behalf of Anthony Nolan and you can donate to either of them here:
I think it's appropriate now to say please give generously. Although give more to Clarky as at least he'll finish.

Monday, 21 March 2011

Zoe: Ohhh Matron!

Sonny's got just one week left of radiotherapy. I think they'll be pleased to see the back of us quite frankly. The hospital's Matron rang to get my side of things following a near meltdown from me on Friday. She was really lovely actually and very sympathetic to our frustration over the drama of trying to get a blood transfusion, the argy bargy over where he's going to be having his immunoglobulin and finding out from an administrator that he's got Paraflu. At least this explains the cough.  The radiotherapy is making him extraordinarily tired. I think the word is fatigued. Daily its a constant battle to get enough fluid into him but today the sun shone and that makes everyone feel better doesn't it.

Sunday, 20 March 2011

Gavin: Weekend round up

Quick one tonight as all is good in Anderson Towers. Rube's is upstairs in the guest room with a chum and Sonny is in my bed with Zo as he can't be left alone while his NG tube runs overnight, so I get the delights of the IKEA duvet and Taylor Lautner posters. David left a very thought provoking comment on the blog yesterday. I hope this helps you mate... click here.

Saturday, 19 March 2011

Zoe: Comic Relief

Ruby's school was closed today so she joined us for our daily schlep to UCH for radiotherapy. Both kids insisted on painting their noses red for Comic Relief. Ruby couldn't dress up as she had an audition later on in the West End (natch) but Sonny insisted on wearing pyjamas although it didn't quite have the LOL response seeing as we were in a hospital. Doh! I thought the whole thing was hilarious.

Thursday, 17 March 2011

Zoe: Help

Much appreciated offers of help flood in everyday but its very difficult to think of what anyone can do. At last here is something you can all get behind from the comfort of your armchairs and it really may help. Please click on this link to help save the NHS. It really is an extraordinary concept that works incredibly hard and I can't begin to imagine the horrors we'd be facing without it.

Thank you

Wednesday, 16 March 2011

Gavin: We're back

Right you lot, enough of this moping around. Sonny's coughing less, his temperature is down to 37ยบ and more importantly we look like we've dodged the nights in hospital. Today's radiotherapy went well and I haven't said 'so what part of putting the child first do you think you're putting first at the moment?' to any knobhead doctor who's only just learnt which ear the stethoscope goes in. Yeah, like I say... we're back.

Tuesday, 15 March 2011

Zoe: National Census

If having to swap doughnuts for Dioralyte wasn't bad enough it was compounded by having to tick the health 'very bad' box for person 3 on the National Census today. Nuff said.

Monday, 14 March 2011

Zoe: Sniff

Sonny's got a cold. He hasn't had one for years and on top of everything else its making him feel really grotty. Although forbidden (as it masks a temperature) I managed to beg some paracetamol from our kind and practical Macmillan Nurse. I really hope he wakes up feeling a little better as he's planning a trip to Krispy Kreme Doughnuts as a little reward for scoring 100% in one of his entrance exam papers... Not only is he gorgeous but he's a genius to boot.

Sunday, 13 March 2011

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.

Saturday, 12 March 2011

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.

Friday, 11 March 2011

Zoe: Sonny's week in pictures

Tuesday, 8 March 2011

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.


Monday, 7 March 2011

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.

Sunday, 6 March 2011

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.

Saturday, 5 March 2011

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.

Friday, 4 March 2011

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.

Thursday, 3 March 2011

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?

Tuesday, 1 March 2011

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.