Monday, 31 January 2011

Zoe: On the day we reached over 100,000 hits

The transfer deadline day is always a bit strange. Nothing quite goes to plan and there's always a flurry of activity towards the close of play. Today was no exception.

08.30: Ring the Whittington and say we are on our way. (Sonny was due to have a routine infusion of immunoglobulin which takes hours and hours and hours and hours
09.00: The bag of amusing things to do and munch was packed and ready so we set off hoping to be out of there in time to pick Ruby up from school
09.15:  Sonny was at home in bed having puked in the car at the end of the road.
09.30: Ring GOSH for advice
10.30: Sonny comes downstairs feeling a bit ropey but he seems to be ok
13.30: Sonny asks for pasta and pesto (phew)
14.00: Community nurse arrives to change dressing, check blood pressure and take bloods
16.00: Ruby arrives home (thanks Jo)
16.05: GOSH return call and they think he may have a virus
17.30: Text message from community nurse with blood results - he needs to drink more
18.00: Whittington call. GOSH have requested that we go to the Whittington immediately for further blood tests, ECG, Xray and ultra sound
18.10: Sonny gets dressed but asks why we can't just do all this tomorrow
18.15: GOSH agree to everything being done in the morning on the understanding if he's sick again or anything changes that we take him straight to the Whittington
18.50: Sonny shouts up a fish finger sandwich
19.50: Sonny wins Top Gear Top Trumps
20.45: Sonny goes to bed
22.30: Gavin delighted, Arsenal have signed both Torres and Andy Carroll and there's still half and hour to go.

Sunday, 30 January 2011

Zoe: Paranoid Parenting

Sonny is sick of me asking him how he is feeling.  Gavin and I scrutinise his every waking move for signs of the dreaded disease returning. He's very tired today and was also tired yesterday. He left a corner off a hot cross bun this morning at breakfast and he hasn't wanted to eat any lunch. This can all be attributed to the steroid dose being reduced of course and I need to calm down or I'll drive everyone mental.

Saturday, 29 January 2011

Zoe: We're on our way... we're on our way

The mighty Arsenal are going to Wembley and so are we - yippee. Thanks to my brother who appears to lead some sort of secret playboy life he's managed to stop skiing for a few minutes, pull a few strings, see a man about a dog and lovely jubbly Paul's your uncle. Voila!  First class, top notch corporate box fumigated for Sonny - must remember to tell them he can't eat prawn sandwiches.

Wednesday, 26 January 2011

Gavin: Butch Cassidy and the Sonshine Kid

Sonny has started to develop a rash on his arms and feet that the consultants today at clinic have said is Stage I GVHD. This (we reckon) is good, as it's what we've always been after, a visual indication that the cells are fighting. Of course, as with all good news there's a flip side which is let's not hope it goes to Stage II or... well, you get the idea.
While there, Zoe inquired about a residential summer camp in Ireland, founded by Paul Newman, for kids that are seriously ill. Turns out that GOSH are heavily involved in putting forward the most deserving cases (obviously) and we have now started the process of enrolling him for August. It looks unbelievable, with fully paid up flights from Heathrow and resident Oncologists and nurses there to change dressings and offer 24hr care. We can go as a family, but Sonny is insistent that he does ten days on his own, feeling that this is his chance to get back his confidence and be away from his fussing parents.
Just imagine how difficult it will be saying goodbye to him at departures and then managing to get all the way back to the check-in desk so we don't miss our flight to Dublin or wherever it is half an hour away.

Monday, 24 January 2011

Zoe: Dowager Countess of Grantham

Everyday's a weekend for me and Sonny. Today was spent munching popcorn at the cinema watching Green Hornet. Terrible but great fun in a what the heck its Monday afternoon and everyone else is at work   kinda way. Sorry folks but we're busy enjoying ourselves.

Saturday, 22 January 2011

Zoe: Morning!

Yesterday was spent getting over the excess of Gav's birthday. It was a celebration in itself for being able to physically go out and mark the event. Now its Saturday morning and Sonny has gone out with Gav to pick up Ruby from kick-boxing with a spring in his step. He was up before us this morning and texted me to see if I wanted a boiled egg for breakfast (cute).  Eggcellent (sorry).

Wednesday, 19 January 2011

Zoe: Ears something else to think about

Really long day today but the good outweighed the bad. We went to clinic at GOSH where we discussed how good Sonny's PET scan was and began reducing his steroids to allow the DLI to keep working. Then Sonny had a hearing test which wasn't so good. We've been worried about his hearing for a few weeks but now we're at home we've noticed its becoming a bit of a problem for him and the test confirmed this. We were warned that the chemo might do this but all his hearing tests during chemo were normal so this may have happened after the seizure or because of the huge amounts of antibiotics hes just had or the DLI doing strange as well as magical things. We'll find out more soon as the doctor only had his results to look at and needs to spend a bit of time going through his medical history before jumping to any conclusions but basically it could get better, it could get worse or it could stay the same - that's all the boxes ticked then doc...   Luckily, we got home in time to see Arsenal finally thrash Leeds.

Tuesday, 18 January 2011

Zoe: Chirpy Chappy

Today was a good day. The best day I've had with Sonny since being home actually. Its amazing how a new idea grabs hold of him and the new twitter thing really pulled him out of the doldrums. Thank you so much to everybody who signed up to follow him today. He was chuffed to bits and its really helped lift his spirits which were worrying me. It was a day of achievements too. I'd tentatively agreed for the teacher to visit. As well as being concerned about how much he'd be able to concentrate I was also concerned about the fatigue he'd feel by simply sitting in a chair at a table. It was a nice gentle lesson and he managed at least an hour and a half which was much, much more than I expected him to cope with. The physio also came round to help him get back on his feet. She'd been following the blog and was pleasantly surprised with the strength he had (she's seen him much worse). His physical repair has been like a never ending game of snakes and ladders. For now we are on the bottom rung but lets hope its one of the long ladders.

Monday, 17 January 2011

Gavin: Tweet to who?

As there's only so much football on telly, finding things to keep Sonny amused while he's cooped up for most of the day isn't easy. So, I floated the idea of a Twitter account and he's off. Please, please, please be your usual amazing selves and click here to follow him. He was delighted to get so much activity on his blog (unfortunately now out of favour despite how good he was at it) that if he can see similar levels on Twitter he may well carry it on. If you don't, you may well miss out on such gems as 'off to bed now'.

Sunday, 16 January 2011

Gavin: Strike

We haven't blogged for a couple of days but rest assured, everything's alright. He's tired and a bit fed up of feeling like he can't do much but watching football in HD on the big telly soon cheers him up. It's Ruby's 10th party today where about 398 kids are bowling followed by a disco. Sonny asked me to stay with him so Zo has drafted in lots of chaperones. I'm gutted, not just because I'm missing the party but I reckon I could have won.

Thursday, 13 January 2011

Zoe: Result

Sonny's PET scan result is looking encouraging and the clever people are pleased. We've been here too many times to be jumping around but we're enjoying thinking from day to day rather than hour to hour. We'll find out more in clinic on Wednesday but it seems that the donor cells (DLI)  have been busy doing something extraordinarily wonderful.

Wednesday, 12 January 2011

Zoe: Top Ten

I think Ruby would say that she'd got all her birthday wishes today... and all before she'd blown out her candles.

Tuesday, 11 January 2011

Gavin: He made it

He's home. More details to follow when I've stopped smiling.

Monday, 10 January 2011

Zoe: One more night

Today's xray showed that his lung had improved. We'd kind of figured that out for ourselves but its nice to have a picture confirming what we'd hoped for. The physio helped him walk up and down a few stairs too which was hard work and quite daunting as we've got quite a few of them at home but he managed to do it with help and crucially without needing oxygen. Keep everything crossed folks... we are hoping to take Sonny home tomorrow.

Sunday, 9 January 2011

Gavin: Honestly

Will someone please shut that bloody baby up, we're trying to sleep here.

Saturday, 8 January 2011

Zoe: On the pulse

Its nearly 9.30pm and Sonny is just settling down for the night. Although he's incredibly tired and finds getting about really difficult he's been wide awake all day. Tonight he's been really chatty asking me lots of tricky questions I can't seem to find the answer for in Vogue about the recent Korean troubles. I've just realized I forgot to reattach his sats monitor (the machine that reads how much O2 is in his blood, pulse, etc) after his bath, such was my new state of relaxation about his breathing. I've just reset it to only alarm at the very lowest and highest levels to try and ensure as undisturbed a night as possible as the only thing that should wake us up tonight is the 4 hourly observations from the nurse... Go Sonny, go Sonny.

Friday, 7 January 2011

Gavin: Prawn cracker

We been reluctant to celebrate Sonny's progress with the words of our Consultant from two weeks ago still ringing in our ears, but today he said he was now 'optimistic', took Sonny off all his infusions and OK'd a chinese takeaway as long as we didn't get sussed by the BMT team. If he carries on 'in air' (wanky term for not being on oxygen all the time) they'll consider sending him home next week. Yeah, I know.
We're not jumping up and down yet as we've heard optimism before, but we've always celebrated the positives and it's safe to say our fingers are figuratively off the emergency button and tentatively holding another party hat ready for Ruby's 10th birthday on Wednesday.
The only thing that would make tonight better is if the Radio Lollypop volunteers swapped all the pens and pencils in their fun trolly's with beer and came round saying 'it's a Friday... one won't hurt'.

Thursday, 6 January 2011

Zoe: Stupid Street

Other mum: How's Sonny today?
Me: He's doing ok thanks but I think he got a bit of cabin fever.
Other mum: Oh is that why you've got a sticker on your door asking people to wash their hands?

Wednesday, 5 January 2011

Gavin: Quick one

Not such as great day today as Sonny was incredibly exhausted and spent most of it in bed. After waking up this afternoon, his speech was slurred and it never really got any better all evening. We'll wait to see in the morning if this is just another thing we shrug off, or if it becomes something that gets taken seriously.

Tuesday, 4 January 2011

Zoe: Well well well

Another good day at Ormond Towers. Sonny played FIFA with his teacher and with his cousin Alex and Lego with his chum Jude. He had three good meals and is now fast asleep tucked up in bed like all good boys should be. We learnt that his chest xray showed some improvement on the collapsed side and that he was EBV negative. This is way too complicated for my tiny wee tired brain to explain today but trust me it's good, interesting news.

Monday, 3 January 2011

Zoe: Back to work

Today is the last day of the holidays. Yippee. Everybody will be back at work tomorrow. Sonny is looking forward to a visit from the teacher at the hospital school (he's good at FIFA). I'm looking forward to surprising a hospital full of refreshed doctors with how bouncy a boy can be with a collapsed lung and the right dose of PMA*.

*Positive Mental Attitude (I'm considering selling some of this to the parents smoking outside the front still dressed in their pyjamas at 4pm)

Gavin: Good going

A good day in Ormond Towers saw Sonny eating and drinking plenty, having a bath and forsaking his mid afternoon nap for a go on his new remote control car. His paracetamol is being changed from 4 hourly to a six hourly infusion (good sign) and they're starting to reduce his TPN. It's all a bit strange really. Last week they had me and Zo making the sort of decisions I wouldn't want to repeat here and today he's asking if he can have another barbecue chicken leg. If he keeps this up we'll need to once again flick the blog switch from ERNEST to FUNNY.

Saturday, 1 January 2011

Zoe: Happy New Year

Short blog tonight. The broken nights are starting to catch up with me and I can hardly keep my eyes open. Sonny wanted me to stay up with him to watch Match of the Day and after seeing the new year in with Jools Holland I'm on my knees. He's been in good spirits today and he's still chatting away to me. His pulse has been higher than is normal all day but it seemed to settle down after Arsenals 3-0 win this evening. Magic.