Sunday, 27 February 2011

Gavin: Oh, what a day

Today was Sonny, Zoe and my first ever Live Cup Final. Sonny and I were guests of the remarkably generous Ruddy Joinery that his uncle Paul had organised, where we ate a three course dinner, drank fine wine and given goody bags of pens, teddies and programmes. Zoe was in the normal seats (at £80, I'm loath to say cheap) where she enjoyed the delights of the normal rabble and a foot long hot dog.
Suffice to say, wherever you were, it was brilliant. The Arsenal team were commanding in possession, decisive in passing and of course, clinical in front of goal. Special praise should go out to Koscielny who seems the real deal under pressure.
Despite leaving before Fabregas lifted the cup to avoid the traffic, we bumped into plenty of Birmingham fans on the drive out who despite everything, were amazing. Still singing their hearts out, a few even waved at us chanting 'bye-bye' with huge smiles on their faces. Just brilliant.
Anyway, here's a terrific day in pictures. Thanks again to the Ruddy family.

Pre match nerves and Breakfast down his nose.

Sonny managed slightly less than three courses but was happy with warm mini baguettes, olive oil and balsamic. Yeah, I know. How nice is that.

Box seats are always terrific. But these were super terrific with a 3/4 view of the whole pitch.

This is pretty early on, I think just before RVP's hat trick. What a player.

Saturday, 26 February 2011

Zoe: Class of '86

Sonny and Gav spent the afternoon on the sofa deep in talk about Arsenals chances tomorrow. Meanwhile I enjoyed a little cuddle in the Albert & Pearl with my old (ha ha) school chums who showed up for a surprise visit this afternoon. Thanks ladies... it was a lot of fun.

Friday, 25 February 2011

Zoe: The day Sonny got four tattoos

Sonny was scanned, measured and fitted with a specially moulded harness in preparation for his radiotherapy today at UCH. They run a pretty slick operation down in their basement and so far Sonny hasn't been kept waiting for a second which wouldn't matter too much as here they have a lovely playroom with a wii that works and lots of spanking new toys. None of what he went through today was pleasant buy any stretch of the imagination but at least it was quick and efficient. Compared to what he's endured so far the new list of side effects we've had to consent to seem quite tame: sore skin, sore throat, feeling sick, loss of appetite, fatigue, radiation pneumonitis, reduced growth and possible heart problems.  However numb we become to it all tame they ain't and unfortunately he doesn't have a choice. Some will disappear with the treatment but he'll have to live with the more serious ones but then these guys will be the heros and tall people always get bad backs so maybe in the long run we'd have done him a favour.

Thursday, 24 February 2011

Gavin: French fancy

Sonny ate a brioche today. I know it's not a miracle cure but in the house of small steps a butter based bun after a fortnight of nothing is well worth reporting. Nicé.

Wednesday, 23 February 2011

Gavin: The plan

We met with three consultants today, all representing the different specialisms that Sonny has been under at various stages of his disease. They have agreed that the next course of action for Sonny will be a month long course of Radiotherapy followed by another DLi. This is not pretty, but it's a treatment we haven't tried yet so there is something positive in not going down the same old route.
From GOSH we sped over to an appointment with the Radiology team at UCH who were extremely professional and talked us through everything from the tiny tattoos Sonny will have to ensure he is lined up every day, to a parking permit that allows us to get a bit closer to the hospital.
It's another big undertaking that involves daily treks in the car to the west end which will only add to the side effects of this new treatment, but as ever we'll fight on.
Here we go yet again. Wish him luck.

Monday, 21 February 2011

Gavin: Quick one

Sonny remained pretty good again today which is great. We're off to see the Wizards on Wednesday who'll tell us what magical potions won't work this time.

Saturday, 19 February 2011

Gavin: You smoothie

You'll all be very pleased to hear that despite the big picture of an advance in his cancer, Sonny is doing pretty well on a day to day level. He's still not eating which means we're squirting 100ml of high energy juice down his NG tube every hour and a half. This is not as easy as it sound. The pressure on a tiny 1mm tube makes chucking a fibre based smoothie into it a bit like pushing dried up plasticine through the holes on the head of Play-Doh Barber shop. I never had one, but Julian Rider did. And he had VHS not Betamax.
In other news and despite everything that's happening, Rubes is performing tonight in South London to raise money for a teenage stab victim's family who's family can't afford a headstone. Yeah, read that again as you tuck into your takeaway. That should make Push The Button feel all the more guilty.

Friday, 18 February 2011

Zoe: Nurse Jackie

Sonny's scan showed that there was lots of disease progression in the right side of his chest (in line with what we saw on the Xray). There is also another tiny area of disease in his abdomen that wasn't there a month ago. His treatment plan is still undecided but it should be sorted out early next week. Until then we're happy to hang out on the sofa perfecting the art of squirting stuff down his tube while not spilling any wine.

Thursday, 17 February 2011

Zoe: Waiting for the phone to ring

Today is decision day. Sonny's name is on the agenda at today at an MDT (multi disciplinary team meeting) where different teams of consultants get together to discuss the best possible treatment available for kids like Sonny. We've been told they'll be discussing two routes. He'll either start a course of radiotherapy followed by another DLI (more donor cells) or start another course of chemotherapy followed by a DLI. There are pros and cons to both avenues. The radiotherapy would just focus on one small area in his chest leaving the rest of his body alone but rather scarily leaving the disease to do what it likes in the meantime. Whereas the chemo would kill off all the fast growing cells in his body but his body has had so much chemo already that it may not be safe to have any more. We have little influence over these decisions and you can see why.  We just have to trust these great people to do the best they can for Sonny. We are just grateful that we are spending this time together at home this time around and that we still have the luxury of options and possibilities to discuss.

Tuesday, 15 February 2011

Gavin: Water. Works.

We really only have two positions at the moment: at home, or in hospital. This is because no one really knows what's going on so the old football adage of 'each day as it comes' is all too obviously true.
It was a good one today. We went for the PET scan at UCH which is always a traumatic experience, but Sonny coped as he always does, despite being strapped into a proper piece of hospital kit the same size as our living room and staying completely still for two hours. Sleeping lions this ain't.
Back at home, we got back to the business of his fluid intake. A Nurse from a Pharmaceutical company came round early to give us training on the pump that will drip fluid down his NG tube. This will alleviate the pressure on him drinking 1.6 ltrs a day to flush out his kidneys. Before the flow is started, you need to draw some fluid from his stomach to check it's the right PH. 5.5 or below means the line is still in his stomach, above and it could have shifted to his lungs, meaning you'd then be pouring fluid directly into them. Eleven children died because of this last year alone, so it's a pretty important part of a process. After all that, the fluid goes in at 50ml an hour, meaning it would take 32 hours to hit his daily target... you do the math. Thankfully, Sonny has started taking small sips on his own again and even managed two rich tea biscuits which is a huge boost to his energy levels.
So, next time you're stressed at work, just think about us drawing bile from Sonny's stomach to see if we could kill him before we try to save him with fluids. Or have a rich tea, both seem to work.

Monday, 14 February 2011

Zoe: My Bloody Valentine

We've become pretty knowledgable and capable at managing Sonny, his symptoms and long list of medications but late last night we had to admit defeat and face up to the harsh blunt truth that we were not coping or winning. He was getting severely dehydrated and we feared we could be doing his kidneys long term damage if we continued to try and manage things from home. The night has a habit of making things seem much much worse so it was a relief to take him to the local this morning so that he could be hooked up to IV fluids. He's now home and feeling much better. He's still not eating but at least he's hydrated and happy.

Sunday, 13 February 2011

Gavin: Sunday

Sonny has deteriorated today and stopped drinking altogether. We called the nurse to get an NG tube (from the nose down to the stomach) fitted so we could get some water and calories into him and by 4pm it was all in. It all seemed to be going OK until he threw up the last lot of drink and has gone to bed severely under his target for fluids. I think we're a matter of days away from hospital now, if not sooner. Will keep you posted.

Saturday, 12 February 2011

Gavin: And make the most we will...

A very touch and go start to the day saw Sonny hitting decent temperatures, but adamant he was going to the Arsenal to watch us hammer Wolves in a box laid on by his Uncle. What a great day it was. We drove into the players car park, surrounded by matt black Mercedes, BMW's that looked like they could hover and watched Theo Walcott's girlfriend struggle to park a £180k Ferrari. Sonny ate half a hot dog (result) and didn't spike at all during a 2-0 win that was a stroll in the park for a dominant Arsenal.
As we left, we bumped into one of our Midfielders who signed Sonny's pennant and stopped for a chat. We took a photo next to his car which really made Sonny giggle. I'm at pains not to mention who the player was. These guys have enough to worry about with press intrusion and I think, looking at how understated his car is, he wants to remain anonymous. (Clicky for bigger).

Gavin: Update

Sonny's HB has dropped sharply so he underwent a blood transfusion at the Witt yesterday. To be honest, it feels like everything is dropping pretty sharply after the news on Thursday. His appetite has gone pretty much altogether and he had his first bout of diarrhea this morning to accompany the temperature he seems to permanently have. It's a short step to being back in hospital now, so we'll make the most of being at home while we can.

Thursday, 10 February 2011

Zoe: Bugger

Sonny's latest Xray has shown that the mass in his chest has got bigger. Its not hugely bigger but its bigger and there is also another area of new growth that wasn't there last week. Putting it mildly this is a huge blow. We are now waiting to get an urgent PET scan done and are gearing ourselves up mentally for another, larger dose of donor lymphocytes. We know that Sonny's cancer is very aggressive and its unfortunate that mild GVHD hasn't yet tamed this beast.

Wednesday, 9 February 2011

Zoe: I'd like to biff Cameron with one of his wife's handbags

We told you all to vote Labour but it seems no one took us very seriously.  This week I learnt that three whole days have been cut from the hospital school budget. They are fighting to keep Sonny's lessons as he's missed so much school but its going to be difficult as this means other kids missing out and in some cases not getting regular home tuition.  The mighty powers that be think that its enough for the child's own school to simply send work to the home. Who are these people and how much thought have they really given this? Sonny looks forward to his lessons. They are made fun, lively and interesting and the skilled teachers attuned to working with rehabilitating kids can switch the pace instinctively with the perception that comes with years of experience of working with children who's lives have been compromised. Sadly I've only got the energy to concentrate on Sonny to take this political fight any further but I'm very afraid that this is just the start... we rely heavily on an amazing highly trained network of outreach workers. Hours are missed in hospital by nurses that come to the house to do bloods, change a dressing or simply take his blood pressure. Physiotherapists visit to see how he's coping that give him the confidence to try getting up off the floor unaided and psychotherapists hover patiently in the wings in case we need help getting off the floor. 

Anyway, better go. Sonny's poker lesson has just started on SkySports2 - seeing as jobs will soon be a thing of the past this could be the future. 

Tuesday, 8 February 2011

Sunday, 6 February 2011

Gavin: The day today...

It's getting harder not to be excited by Sonny's progress. Between the mountains-to-climb or long-roads-to-travel constantly replayed to us by Consultants we can see our little boy seemingly recovering.
I say seemingly not in any depressing way, but with the realism that his cancer is incredibly brittle and we'd be foolish to think it was simply kicked... it doesn't work like that in this instance.
However, the scare of last week where he began to lose his appetite and start being sick, seem to be blamed on the blood pressure medicine rather than the tell tale signs of a relapse as both side effects have stopped when the tablets were. His blood pressure, while we're on the subject, is almost normal. After months of thinking 80/50 or 140/60 were fine he's now within a couple of digits of his target of 110/80. Another sign that his body is getting back on track.
His hearing is still an issue. Although it's easy to write this off as a 'well, if you get him back that's the least of your worries' kind of way, I disagree. He'll begin to blur the memories of this experience as he gets older, but hearing issues will stay with him for life and be difficult. I'm more cross than upset, but I'm sure that if Sonny needs aids he'll manage them with the same indifference he has everything else. He's better at that than I am.
But despite that, it's Sonny that's giving us the most hope. He's lively, chatty, funny and pushing himself to walk further and try harder. He's the one shouting up the tutor to come and getting excited about his tweets. He's keeping us going when we're all stuck in the house. It feels like he's really back in the room.
For him the weekend was even more exciting. Manchester United lost at bottom of the table Wolves meaning they can't emulate Arsenal's unbeatable season, Chelsea got taught a lesson by Liverpool despite the introduction of another £50m sulker to add to their over-indulged squad and Arsenal came back from four goals down to secure a vital point at Newcastle, securing their place as the club to beat this season. A red letter day indeed.

Saturday, 5 February 2011

Zoe: World Nutella Day

The world looks different when you've got a 5kg tub of Nutella in your life... for those of you not nuts about Nutella we thought we'd let you know that its World Nutella Day today (seriously). Now thats what I call a holiday. How did you celebrate?

Friday, 4 February 2011

Zoe: Magic of Disney

Sonny woke up feeling a lot brighter than he had all week so we went and saw Tangled... and its fair to say we both shared a bit of a moment during the lantern scene (gulp). Go and see it this weekend if you're in need of a Fairytale ending.

Wednesday, 2 February 2011

Zoe: Bad Medicine

Back in the comforting bossom of GOSH today. After yesterday its incredibly comforting to be back where everyone knows his history. The care here is exceptional. It really is, Sonny's consultant joined him in his ECHO just to get him home a little quicker. With every week Sonny's been at home his medicines seem to have increased. He's got a bit of fluid around his heart which could be GVHD but not enough for it to be a big problem. His high blood pressure is not bad enough for all the side effects of the medicine we started last week to reduce it so we've stopped that altogether and also come off a few other medicines to give his kidneys a bit of a break... still waiting for X-ray results but in amongst lots of ifs, buts and maybes he's home and shouting up take away pizzas as a treat for a couple of rough days.

Tuesday, 1 February 2011

Zoe: Testing

Sonny's blood results are deranged. I read that word on his notes today on our way for an Xray and it properly made me chuckle - it seems to sum things up beautifully. The Whittington was a well oiled machine today and the day was spent going from test to test which highlighted what was wrong but we'll have to wait for why and what we can do tomorrow from the good gods at GOSH.
Be nice to do a week where nothing happened at all. We'll never complain of being bored again.