Zoe: Yes, I'll hold...

Sonny's neutrophils recovered enough for him to complete his chemo yesterday. Huge sighs of relief all round from us but he had to pop back today for some platelets as they were too low. The original plan was for Sonny to have another PET scan on Monday to see if the chemo had had any effect, followed by a planning meeting on Thursday. However, I've just had a call to say that its too soon to tell and its been put back to 1st November. As glorious as it is being at home the downside to it is you have to be told these dramatic changes of direction over the telephone by a rather green registrar fresh out of a meeting with the clever consultants. The registrar will often openly admit we may probably know a bit more than them on the subject when we start picking apart what they say and begin questioning the messenger. And so the telephone tag continues... Its the NHS after all. Our oncology consultant is something of an elusive demigod at the best of times, however he seems to get my angst and even telephoned today to support me through my hysteria on learning that we still don't know if Sonny's donor is up for round 2 or not. Its exactly for reasons like this that the donor and recipient remain anonymous to one another.

Zoe: State of flux

Sonny's blood counts have dropped through the floor. He's neutropenic and his platelets are very low. This is all to be expected as a result of the chemotherapy. However I didn't expect to get a phone call yesterday to say that his counts were so low that his chemo would have to be delayed. I had a bit of a Michael Douglas, Falling Down moment at this news. Any ways turns out that I shouldn't have been told that and after a few desperate phone calls I was assured that he was a priority case and that everybody was working on a plan.  We're off to GOSH now armed with armfuls of Match Attax to pass the time. Thanks to all your gob smacking generosity...  He properly loves them and they don't hurt nearly as much as stray lego when you tread on one either.

Zoe: Pretty in pink

Hee hee, Ruby's wearing a pink dress. She's all dressed up to be Katherine of Aragon in her school assembly which was ace by the way. It was like Noel's Houseparty here today with Nanny and Da sitting for Sonny so I could go to marvel at the assembly; a visit from my cousin Emily all excited about a new job; Ruby's guitar teacher and Sonny had both the hospital school teacher closely followed by his tutor to see if we can get him up to speed for the looming entrance exams (whatever).  I can't believe I've got to send the secondary school applications off without actually seeing any schools but hey I guess that's what the wonderweb is for eh...

Gavin: Sleep over

Sonny went to his mates for a sleepover at the weekend. Yep, you read that right. We figured that keeping him in a bubble is all well and good but is it really helping him mentally? Of course, we needed to check all the other kids were well and gave poor Jane a 30 minute lesson in clamping hickman lines and temperature monitoring but he had a brilliant time.
Rubes was on a sleepover as well so me and Zo went mental in Shoreditch. When I say 'mental' we had an early tea then drove home and drunk squash in case we needed to join an ambulance at The Wittington. Then Ruby rang up in tears so we went and got her. Then we were pretty tired so we went upstairs to read our books in bed. Yeah... woooo... yeah... etc.

Zoe: De ja vu

This is Paddington Bear perfecting one of his hard stares. Isn't she adorable... she was dressed up for World Book Day even though the last one only seems a few months ago. Meanwhile, Sonny had his chemo on Safari Ward as an outpatient. It felt very weird to be back there - the thought of having to go there initially for 6 months of treatment horrified us at the start but now I long for those heady days of optimism. They run a pretty slick operation up in Safari and we were only there about 4 hours. This chemo isn't nearly as harsh as some others he's had to endure and I'm delighted to report that he's doing really well and seems to finally be one of those kids who sails though it. 

Gavin: A pretty shameless plug

With a stunning lack of foresight, some of you may remember me and Zo bought a house in Italy a couple of years back. Despite having a couple of other things to take care of, with the help of some great people in Italy (and some deep pockets from our families), she's managed to get it ready for rental.
So, clicky the picture or the link below and feel free to book it up, recommend it to your friends or say things like 'I don't think it's really appropriate to sell their villa on a blog about their son's illness'.

www.casalucciola.com

PS it takes a while to load, but we're working on that.

Zoe: Light at the end of the tunnel

Sonny is online, playing on his PS3 with his chums. He's wearing a headset and chatting non-stop to his friends. I can't believe how excited, loud and bossy he's being. I'm worrying about the deep scars that enforced isolation have left on him and the maze of possible physcological side effects of all he's been through... and then it hits me. This is Sonny being himself. I haven't heard him being like this for such a long time and I've actually forgotten how he behaves when he's having a really good time. In all the nightmare of diagnosis and treatment our boy continues to shine through.

Gavin: So this is normal

We left the hospital today at around 3pm rather than midday after Sonny had another reaction to the GCSF. As we left, I said 'well that was a pretty good day' as we'd managed to get out before 6ish. It wasn't until I got home I realised what we're now taking as normal.
The reaction to GCSF makes his lungs compress. This makes him drastically (and very scarily) short of breath and raises his blood pressure dramatically. His sats, which normally sit at around 99-100 drop to around 80, his temperature increases and his heart rate climbs to around 160. There's a lot of activity and a senior nurse pushes in a double dose of piriton (presumably because as they're senior they don't need to have it signed off by another nurse) while the doctor checks his lungs for any serious blockages and our assigned nurse takes his blood pressure and whacks him on 10 litres of oxygen. Sonny continues to be sick and feels terrible as his body goes into overdrive trying to reject the infusion. Finally, after around 20 minutes, things begin to settle down. We restart the infusion with 15 minute blood pressure and temperature readings and then wait an hour after the infusion to see if there's any change. He needs to eat something to ensure it's not gut related and be seen by the senior nurse who's bucked the rules to get the Piriton in.
I'm not writing this to make anyone feel sorry for us or him, just to point out that before we used to shit ourselves if he received a bad tackle at football. Looks like our goalposts have changed .

PS A few people are asking where to send Match Attax... as we're home, feel free to send them to 30 Prah Road, N4 2RB. Thanks.

Gavin: Quick one...

Sorry for the lack of blogging over the weekend. Sonny tolerated the chemo well, we argued for him to come home a day early so we could be in to watch The Mighty Arsenal™ beat Chelsea 2-0 despite being away from home. As usual, Sonny had a nasty reaction (just as we were leaving) to a different drug that was meant to help him and ended up on oxygen, but it passed and he seems fine now.
We're back in today to have the same drug so they're frantically working out a different way to give it to him. Hopefully we'll be home in time to catch the end of the Ryder cup to watch Europe clinch victory over the Sceptics.

Sonny: MATCH ATTAX

Sonny here and I have news. Match attax are back and they are better than ever. For those of you who don't know match attax are like the best thing for hospital and I went mad for them last year collecting both the premier league and world cup versions. I have been so hooked on lego at the moment but lets face it that isn't cheap and today one set cost me about £50. Lots of people have been offering to get me lego but its so much money that I feel like its my birthday every time I get one and that is frankly ruining my birthday list and need some sort of lego to keep me going between my birthday and Christmas or i'll be as bored as ever. If you want to get me a present match attax will do just fine. Thanks for reading you can get a bit more info on my other blog the FA. If though you insist on getting lego tell me before you get it and I will send you a list of the ones I want. If you add a price range it makes it a lot more easy for me to pick because I have a habit of milking offers like lego and only give you a list full of £60-£100 sets. And than I get annoyed that you got me something cheap when I asked for the pricey ones. Thank you and any cards will be welcomed.