Tuesday, 29 June 2010

Gavin: Sore subject (BMT+27)

Sonny was off his lines today at midday and was scheduled to go to the gym this afternoon. Except, overnight a cold sore appeared and he couldn't go anywhere in case he spread it around. I don't really know what all the fuss is about, the last time he snogged the physio she was fine. Heartbroken, but fine...

Monday, 28 June 2010

Zoe: Purrrrrrrrrrroblem (BMT +26)

I've lost count of the number of people who regularly say they'll do anything to help but I really don't think any one of you had what I'm asking for in mind when you made your kind offers...

I need to find a foster home for our two cats. Both kids are distraught but we don't have an awful lot of choice. So think about who you know that likes cats a lot who doesn't have one at the moment and would possibly like two for a few months. Ideally they should live locally so that Ruby can visit them. Over to you.

PS, they are moggies but Gav likes to think of them as very rare pedigrees... no pressure then!

Sunday, 27 June 2010

Gavin: Stop and watch the world every once in a while (BMT+25)

Today's performance by England was entirely predictable. Drawn against the old foe and peppered with smatterings of a war no one is allowed to mention but fuels the flag-waving patriotism, we were cruelly dumped out of the world cup after more goal line controversy. Except we weren't. Germany would have won despite the goal that never was due to an England performance owing more to blancmange than backbone. Wasn't Four Million Fabio meant to give us the discipline that every other manager has lacked? However, I don't blame them. If I pampered my kids with money, jewels and limelight how could I expect anything more than precocious brats who are constantly lifted skywards by the hot air of the army of manicurists, tattooists and massuers around them?
Anyway, after the game, I took Sonny to the park and we kicked a ball around for at least 20 minutes. He has to sit down a lot as it hurts his legs and, during one of our breaks I asked him what he was thinking (as he wasn't saying anything). Not much dad, he replied... just watching the world. So, I watched the world too and you know what, there wasn't any vuvuzelas, face paint or Emile Heskey. It was brilliant.

Saturday, 26 June 2010

Gavin: A (yankee doodle) dandy day (BMT+24)

Sometimes, you have a really great day despite not much happening. Maybe it's because there's nothing odd happening with his bloods or his temperature hasn't done anything worrying. Or because we managed to get out again and kick a ball around for a few minutes in the park. But I think the real reason you have great days is when Sonny does... it makes such a difference. I arrived about 2ish and since then we've talked about football, watched football, played football, chosen his new football boots and discussed football transfers. We're currently waiting for extra time in the USA v Ghana match where we're keeping everything crossed for the Yanks. If you don't know why we're supporting America then like OMG, where have you been? We're pretty big on the internet you know.

Friday, 25 June 2010

Gavin: A very dirty dozen (BMT+23)

After such an exciting day yesterday, it was inevitable that Sonny would be bought back to earth with a bang. The diarrhea sickness started when he got back from the park and struck every hour until around 5am. As usual, it could be a number of things, ranging from a bug (most likely) to GVHD, something he ate that disagreed with him, or the fact that it's coming into the weekend and Sonny never gets ill on a Monday morning (Zo's called the phenomenon Locumotions).
Whatever the reason, he woke up after one of his worst nights in a long while quite chirpy and asked that we watch the classic war film 'The Dirty Dozen'. As this was weirdly the number of pyjama bottoms he went through last night, the coincidence has got me thinking there may be a link... Next Friday I'll be screening back to back episodes of 'It'll be alright on the night' and avoiding 'There will be Blood' like the plague.

Thursday, 24 June 2010

Zoe: Sonny 1 - 0 Cancer (BMT +22)

The euphoria of England progressing to the knockout stages of the World Cup pales into insignificance compared to what took place today at Queens Square. Sonny Anderson made a long awaited appearance and it was as if he's never been away.
There was no trophy to play for, no media spotlight, just one boy with a huge smile on his face and that's what football is all about.

(thanks for the words Andy)

Wednesday, 23 June 2010

Zoe: Defoe a winner (BMT +21)

Two magical things happened today. Against the odds England made it through to the knockout stages and more importantly Sonny has reached +21. The first three weeks were meant to be very bumpy so we are in a celebratory mood... as you can see from the photos. Enjoy.

Tuesday, 22 June 2010

Gavin: Texting... (BMT+20)

Daddy: Hey mate, just seeing how you're doing. Love you x
Sonny: I'm ok just talked to the person who helps you feel better
Daddy: And did it help? x
Sonny: yes
Daddy: great stuff, not long till I see you buddy x
Daddy: Are you watching football? What's the score? x
Sonny: 2-0 South Africa and france have 10 men
Daddy: Oh dear, oh dear, oh dear. There goes my outside bet. Bugger x
Sonny: The commentary is so bad I would rather listen to paint dry than to them
Daddy: Ha ha... Very good! x
Sonny: Uruguay and Mexico threw
Daddy: Unbelievable stuff. Thanks for letting me know John Motson.

Monday, 21 June 2010

Zoe: Drip stand off (BMT +19)

Sonny's next mountain to conquer is food. If he starts to eat he can come off TPN (nutrients in a bag) and his PCA pump (morphine). If he starts to eat well he'll be able to take most of his other daily medications orally. This would be great as he has to go everywhere attached to his enormous drip stand. (He took today's photo by the way as part of a school project). However its easier said than done. He's not been allowed to eat for nearly 4 weeks as they've been resting his gut and during this time he's also been incredibly sick and nauseous. He's been allowed to eat and drink since Friday but so far since being given the green light he's only managed to eat 3 little fromage frais yoghurt things - yes, the really tiny mini ones. We are not worried though, he'll get there, he always does because he's amazing.

Sunday, 20 June 2010

Zoe: Small steps (BMT +18)

Sonny was very tired today. His bloods have dipped a bit which was a tad alarming after they'd been climbing so steadily. Although we were told not to worry... Hopefully he'll feel less tired and a bit brighter after a blood transfusion tonight.

Today's picture is brought to you by Robin, Emily and Lucy from his school. They took part in a cancer charity event today in support of Sonny. Brilliant effort! The picture really cheered him up. Hopefully, it won't be too long before he's back in the classroom refusing to talk to girls.

Saturday, 19 June 2010

Gavin: A really good day (BMT+17)

Sonny had a terrific day today. He went for a couple of walks around the ward, properly thrashed me at World Cup Monopoly and teased our Spanish doctor about their result (and got teased back, obviously). We were obviously gutted that England played like Bolton on a wet Wednesday at the Emirates and has now written a list of the teams he will support in the likely event we capitulate at the first hurdle. Strangely, France wasn't written down... the fool. In other news, there's a new set of consultants doing ward round who also gave him a big thumbs up as you can see from the picture. In fact, I reckon Professor Da and Consultant Nanny look like the real thing... it's only the warm smiles and delight in being allowed to see him that really give it away.

Friday, 18 June 2010

Gavin: Model behaviour (BMT + 16.5)

Zoe: We've got that Friday feeling (BMT +16)

Sonny's blood profile now matches that of his donor entirely. This means that all of Sonny's cells have been removed and he is now 100% donor. This is really good. So good in fact that I felt like blocking the door and not letting the consultant out the room so he could keep telling me again and again.

So what happens next? Well, we hope that Sonny gets a rash. This shows his new immune system is fighting his body and his Hodgkins Disease. This is called GVHD (graft versus host disease). If he doesn't get GVHD they can make him get it by turning some of his drugs down. GVHD can also be quite nasty too so they will also be watching him very closely to make sure he doesn't get too poorly as it can attack the whole body (a little skin rash would do for us). For now though the plan is to just leave him to get better before the GVHD starts. He's been allowed to sip some water which made him sick so it might be a few days before we get him eating but we are liking these small, slow but bouncy steps. Crunchie bar anyone?

Thursday, 17 June 2010

Gavin: World cup Willy (BMT+15)

In World Cup terms Sonny is currently Argentina with a side order of Mexico. He's a fantastic performer that's had some problems but seems to be coming through well with good results... whilst stumping the critics by pulling out out some amazing results. However, Despite the game tonight, I think he's more like france. Poor in the opening stages but will get through and astound the critics by winning. Yeah, I said France will win. It really has no bearing on how Sonny is but put £10 on them. I dare you.

Wednesday, 16 June 2010

Zoe: How does Bob Marley like his doughnuts, with Jamm'in(BMT +14)

Now Sonny is starting to feel a little better he's able to partake a bit more in some of the fun stuff laid on to relieve the boredom. Today a lovely lady called Nikki popped in laden with instruments. It was really amazing. She just laid them out on the bed and gave Sonny some drumstick then plugged in her keyboard and away they went. It was music to my ears.

Tuesday, 15 June 2010

Gavin: This has not been photoshopped (BMT +13)

OK, we've been pretty neggy recently with a blocked telly, a blocked sink and blockhead directors so here's something we can all get excited about; Sonny came off greens today and is now on yellows. Oh yes people.
Now I appreciate that before you all get out your vuvuzelas, you need an explanation. As his bloods are so low, Sonny is on Greens. This is the strictest regime where he washes in bottled water, can't see his sister and isn't allowed out of the room. If he posts nuetrophils of above 0.2 for three days in a row, he goes onto Yellows, where Ruby can come in, we don't have to wear aprons and he can venture out (as long as he stays on the ward). Think of the recognised global system of traffic lights, but in reverse.
It's pretty rare that this happens so quickly (we were told not to expect anything for 21 days) but considering everything that's happened has been pretty rare, this is par for the Sonny course - except in a fantastic way. Anyway, our friend Claire bought Ruby in and his face lit up. They played World Cup Monopoly (what else), had a nice chat and, when I turned up he asked me to stay outside so he could concentrate his conversation on her. Lovely
To be honest, there's no more to say. On a scale of one to ten, this is unbelievably, bloody brilliant. I'm off to bed now on a wonderfully fluffy cloud with a big nine on it.

Monday, 14 June 2010

Zoe: Draining (BMT +12)

The saga of the ward refurbishment continues...

On a positive note we have a few tv channels and the internet connection has been switched on so at least Sonny can now watch the football and play on his PS3. However, all the sinks have blocked. Turns out the builders were tipping their waste down the drains and now all the pipes are full of cement. Hand washing is one of the key elements of hospital hygiene and on our ward this is more essential than in any other but someone forgot to pass this little nugget of information on to the builders. Has anyone seen the film Falling Down? I feel a Michael Douglas moment coming on.

Sunday, 13 June 2010

Gavin: Breakfast! (BMT+11)

Saturday, 12 June 2010

Zoe: Glum (BMT +10)

If you think Robert Green was having a bad day then spare a thought for the team responsible for getting the tv working in room 5 on Fox Ward. At 12.30pm Sonny switched on his tv to watch the next World Cup installment to discover that ITV had disappeared. Works were called. The man in charge was called at home by Gav. Two men arrived to sort it out. They couldn't. Another man was called in (from Whitstable). He couldn't sort it either. Our little room has now taken on the feel of a caravan with Gav in the corner holding an ariel with his big toe by the window. RUBBISH.

Friday, 11 June 2010

Gavin: A moving day (BMT+9)

We moved into the new ward today amongst a huge fanfare of how amazing it was. It was pretty smooth to be honest considering there's a lot of kids all having serious stuff pumped into them, but after that it all went pear shaped. GOSH have invested in an integrated TV system that allows you to browse the web, view patient information and has over 80 channels to choose from. But, despite having a moving date of 1 June to get all this ready, the only channel working was Dubai TV. I shit you not.
Now I'm not expecting 5 star hotel service or think anyone would jump through hoops for me but, on the day the world cup launches, I at least expected them to have the 4 terrestrial channels so my football mad boy could watch the only thing he's been looking forward to for three weeks.
I lost it I'm afraid. At the peak of my onslaught, I had two people from patient liasion, the Ward Sister, two IT guys, a TV contractor and the Director of Hospital Procurement (lots of hand shaking) outside the room trying to work this out. I was given two portable TV's (both without aerials) and a laptop to try to get it streamed live. Unfortunately, I was a proper arsehole but it seemed to pay off as, by 5pm, they'd added 2 'fake' channels at the end of the list that showed BBC1 and ITV (you just can't 'tune in' these mothers, they need about 15 people to reprogram them). Sonny watched the match and told me I was the best dad in the world. Yeah, you bet.
So... the new TV system. It's perfect for patients in an open ward who will order their food on it and watch TV with headphones. But, in a BMT ward, it's basically a tiny 18" telly that needs to be near Sonny (it's touch screen you see) which means no one else can watch it because of that angle. It's already covered in fingerprints (he's ten after all) and it looks like we'll need a visit from a bloke in a long black leather coat and sunglasses just to get his PS3 working on it. The gantry that holds it is solid steel and at forehead height above the parent bed - I've got two lumps already. It's like a giant robot holding an ipod.
It must have cost at least £30-40k per room. For a grand they could have had a 40" flat screen with freeview (like the Wittington), but if anyone would have suggested that, I'm sure they would have looked at them like they were mad... "How could these kids possibly cope without instant billing on demand and a full overview of hospital services?"
I just wish the people who made these decisions had actually spent a few nights in a room to see the subtle nuances of how you need to operate in them to keep things flowing. Then, and only then, could they see just how utterly ridiculous this decision was.

PS That's Sonny filling in 1-1 after the first game on his wallchart. Seeing what he has to lug about everywhere, you can probably understand why I just wanted him to be happy

PPS One of the other dads who kept his mouth shut and then walked off through the whole episode moaned to me tonight that he couldn't watch the football. I didn't tell him about the 'secret' channels. Told you I was being an arsehole.

Thursday, 10 June 2010

Zoe: Fix up look sharp (BMT +8)

Today is properly up there with the list of days you know you'll look back on in years to come with huge affection - I think we'd call it 'a moment'. The gorgeously wonderful James Corden and Dizzee Rascal came to visit Sonny today. They didn't just walk through the ward and happen to say hi through the window... they really came to see Sonny (through his looking glass).

Sonny sung BBBBBBBBBBBBonkers to Dizzee as he sings this whenever he has an MRI scan as he thinks they make the same sound. We all sang along to "Shout" together and Sonny and James and a lovely long chat about Arsenal, West Ham, the England Team and James' TV shows and of course the god that is David Beckham. Hilariously, James and Sonny had the same view of David - that he smelt amazing. Thanks guys, you rock.

Wednesday, 9 June 2010

Gavin: Ruby slippers (BMT+7)

Seven days. That's a whole damn week people. And considering the new cells won't start growing until day 21 then we're a week in of three. Which in Sonny's new world is a third of the way through. It's a long time for Ruby as well who skyped her brother tonight and had a nice chat on his request. It's super tough on her not just having only one parent around at one time but not having her brother there - watching cartoons at 7am on a Saturday just isn't the same. She sent a text to Zo tonight which I can't work out is covering up her grief or simply genius. You decide...

Yo mum it's ruby I had a g r e a t day up down all over and spelt backwards. I felt like I wanted a text chat so here I am. We got the bus home and it stopped at highbury barn gooey with double stink. When dad got home he fussed nanny about because she didn't do the washing right or something. Nanny and da send love to you and Sonny and you write back soon love ruby. Over and out.

Tuesday, 8 June 2010

Zoe: May the force be with you (BMT +6)

Sonny smiled today. A huge beaming beautiful smile, his first genuine grin for days. We've moaned a bit lately but today it really was Great Great Ormond Street and I feel immensely grateful to the wonderful people who arranged this visit for all the kids - I'm sure his had more impact through 4 inches of glass!

Monday, 7 June 2010

Zoe: Balancing Act (BMT +5)

We've been really worried about Sonny's recent dependence on oxygen. It has increased from 2l to 5l per hour (might be per minute. I just asked our nurse and she thought it was per second but that can't be right either as surely that would take your face off). Anything above 2l has to be taken through a mask which is pretty distressing for him and rather unpleasant for us to see him having to endure it. There is too much fluid in his body and it is collecting around his chest. Since he can't eat, everything that goes into him is liquid - his TPN (nutrition), blood products plus the 60 + infusions he has a day. As well as having regular blood gases taken he also has to be weighed at least twice a day along with anything else that comes out of him. Then the doctors get the tricky job of working everything out. Everything started to go wrong with his levels when his infection got out of control on Tuesday but they are starting to make things better and he's currently coping well this evening on 2l again. Anyway, it turns out that we don't need to be quite as worried as we have been. His consultant is very pleased with how he's doing and would be happy if he stayed just as he was for the next 7 days. I wish consultants worked nights and weekends...

Sunday, 6 June 2010

Gavin: Things that go bump in the night (BMT+4)

Yet another night of drama as Sonny's sats dropped to an unacceptable level at around 3am. Visits from the ICU nurses was followed by the x-ray machine to see if there was anything wrong with his chest. Because of all this kerfuffle, Sonny's sats improved by themselves and after a couple of hours everyone was back to sleep. They're now in the process of reducing any drugs that, although good for sickness, ain't that good for breathing so the Lorazepam has been halved and the Morphine mixed with Ketamine to try not to knock him out too much.
After all that, he had a great day, thrashing his mum at Monopoly with a low value acquisition strategy and laughing at a bunch of fat celebs showing themselves up against Zidane in the Socceraid match on telly.

Saturday, 5 June 2010

Zoe: Friends (BMT +3)

You know who you are and you have all been amazing. Its been a hideous week and your calls and texts of support have been a huge comfort, thank you.

The picture is from the mind-blowingly kind Verdecchia family in Italy. They commissioned an artist friend of theirs to come up with a positive image of a boy getting better every day playing football for Arsenal who has a passion for life. Check out the date in the bottom corner. All your kindness to all of us really blows us away.

Sonny has been feeling pretty rotten today. They tried taking him off the Lorazepam to make him feel less like he'd eaten a stack of space cakes from a crap party but the sickness wouldn't stay away so he's back to his student ways. Not that he's got anything to throw up. He's not been allowed to eat anything for the last week and probably won't be allowed to eat until +21. This is to try and prevent graft versus host disease (GVHD) in his gut. More about this little beauty later. I'm going to go back to watching him sleep.

Friday, 4 June 2010

Gavin: BMT +2

Three kids on the ward have been taken to ICU in the last couple of days and haven't come back quite as quickly as Sonny did, so we're starting to appreciate why BMT is seen as the last option of treatment in kids. Sonny has done pretty well today and, although he's really spaced out most of the time on Morphine and Lorazepam, has stopped vomming every 5 minutes which is so much nicer for him. I nearly pressed the red alarm button today (all the nurses run to whichever room presses it despite what they're in the middle of) as Sonny couldn't catch his breath and got very scared. Despite being obviously terrifying, the doctors reckoned he'd simply 'forgotten' to breath due to the relaxing nature of the drugs. I've had a chat with him and asked him to maybe forget where he put his PS3 controller rather than his lungs next time.
We also found out today that Sonny's hair will grow back differently and he'll change blood type, going from B Positive to the donor's A Positive. In everything we've learnt, for some reason that fact blew my mind.

Thursday, 3 June 2010

Zoe: BMT +1

I haven't given today's blog a fancy title as it felt so good simply typing +1.

Sonny slept really well last night and he amazed everyone by keeping nice and stable with his blood pressure above 98. He was going to have to go back to PICU if it dipped below 95. The huge cocktail of antibiotics seem to be working. He's starting to look better, looking less puffy and a better colour and he's not having such violent temperatures. We are by no means home and dry yet, we've been told that trips to PICU are very common on this ward but we seem to have some breathing space.

Wednesday, 2 June 2010

Gavin: Down, then up. (BMT Day zero)

The last 24 hours have been tough. Sonny's infection has worsened and at midnight the decision was taken to move him downstairs to intensive care. Essentially, the infection is making his blood vessels leak fluid into the surrounding tissue which means his blood pressure is dropping to to the levels of a newborn baby. Although hard to repeat, it was made quite clear that without intervention, Sonny would go into cardiac arrest.
As Sonny is in isolation, he entered a similar room on ICU which was basically banks of monitors, pumps and syringe drivers. All these were driven by a specialist nurse from a computer in the corner and from the moment he entered, the activity was relentless. Canulas were put in his hand to give them the maximum amount of lines to use and an infusion of adrenalin was started to get everything stable. His usual drugs and new ones essential for the transplant today couldn't be forgotten and watching this nurse at work was quite incredible.
Of course, he had a terrible night. ICU is not there for comfort, it's there to save lives so the lights stayed on and the nurse slammed around to ensure he continued to get a reaction from Sonny. This morning Sonny's blood pressure did stabilise and the ICU consultants were happy enough with his progress to let him back onto Fox ward so he could have his transplant. Despite taking something of a backseat (considering we've spent the last two months building up to this) the transplant went fine. The blood consultant told us that it was a really good sample with a huge number of cells which is all we could ask for. Thanks again Yeehaa (Sonny's new name for his donor).
Tonight Sonny is hot, bothered, exhausted and feels terrible. The infection is not going away but he's now managing his blood pressure himself. ICU are monitoring him hourly and will take him back down if his pressure drops below 95. As it went to around 60-70 last night we're reassured he's in the best possible hands.

ICU: The only machine not used was the one with the plastic on it.

BMT: See that little bag of blood in the top left? That literally holds life in it.

Tuesday, 1 June 2010

Zoe: One more sleep (BMT -1)

Gav should have waited for the doctor in the sluice room. Its 9.30pm and Sonny has just turned out the light to go to sleep on what has been 24 very uncomfortable hours. The locum doctor barely handed anything over to the 'new' locum doctor. Vital medicines were overlooked and even when they were written back into his protocol they were still overlooked. Duh... I thought doctors were meant to be clever. The stress of keeping on top of everything while seeing Sonny suffer is getting to us both. Can you tell? However, today was business as usual and the consultant soon sorted out the doctor and the nursing team seemed rather more on the ball and at least answered our call button within 10 minutes of pressing it which is a massive improvement.

Sonny is fighting a nasty infection of some kind which has given him the rampant runs and a very sore bottom, low blood pressure and super high temperatures. Thankfully, today's doctor is a bright young thing who's prescribed lots of things to make him feel better and they are starting to work already - see clever doctor. Its full on though with lots of juggling of line space to fit everything in and requires one to one nursing which with relief we have tonight. Not one to fuss, he went to sleep happy, looking forward to his big day tomorrow.