Gavin, Zoe and Ruby: At peace

Our service for Sonny was a beautiful tribute to a beautiful boy. The church holds 450 people and there were plenty standing at the back. For those that weren't there, Sonny entered to Elvis 'The Wonder of you' that the Arsenal team come onto the pitch too and from there we had a number of people saying the most amazing things about our dear little boy. Tanya Watson, Sonny's Head Teacher spoke about his time at school, Andrea read a beautiful poem that she'd written whilst looking through pictures, Lisa read some wonderful words with her daughter by her side, David said some truly amazing things about Sonny, his school friend Gabriel played the Last Post on the trumpet, Andy told a lovely story about being with him as a friend not man and boy and finally, Ruby read a poem that she'd written herself which is making me cry thinking about it now. I've added a couple of images at the end of this post for you to see yourselves. The poem is Ruby's.

We didn't need to ask anyone to speak, they had all volunteered and, although the stories and words were all from different places, they all had the same theme; Sonny was an amazing, talented, humorous, warm, courageous, gritty, kind-hearted, handsome and loving boy that deserved all the love and attention we could give him.

After the service, Sonny was walked what proudly felt like miles down Upper Street until we headed off to the cemetery passed the Emirates where someone had decorated the Guns with sunflowers.

The brief committal to the grave was followed by throwing in handfuls of lego (another great idea by Ruby) and, we found out later that after we left, his school chums sat around the grave for an hour or so chatting to him. Victor, who looks after everything at Highgate Cemetery, waited patiently with no hint that he needed to get on. It was the same level of care and understanding from the Cemetery and the Funeral Directors, Millers on the Essex Road, that we've had all the way through. Sometimes these men, so used to death, were in more tears than we were.

There are too many people to thank here. The kindness and support we've received not just in the last 12 days but over nearly two years has been truly unbelievable. From unexpected gifts to cooked food, presents from abroad (Moosey is still with him now) to helping with Ruby, we've been constantly overwhelmed. Friends, family, Doctors, Consultants, old and new school chums, Great Ormond Street, The Whittington, Community Nurses and physio's, Millers, Highgate cemetery and Revd Simon Harvey. You all know who you are.

So, this is it. After 533 posts we don't feel it's right to carry on with A Sonny Outlook. The blog allowed us all to be involved in Sonny and gave us a great way of sharing him. The title meant we always remained positive in the darkest moments and, without him there is no point in carrying on. There is a huge point in carrying on with our lives though and we will now focus all our energy on us and especially Ruby.

Elvis has left the building.

Gavin and Zoe: A little more detail

We appreciate there are some questions people will have about Monday's arrangements but don't feel appropriate to ask. So, in the style of how we've run this blog (and because Sonny wouldn't want any stone unturned) here's a list of things that will hopefully answer anything you've been thinking about:

Time:

We will arrive at the church at 11.45am with Sonny.

What to wear:

Anything you like really. We'll obviously be in black so whatever you think is appropriate. We'd like the kids to wear their football shirts if possible and, as I explained to a worried Jude last night, there's no way you'd have got Sonny in an Everton shirt if the shoe was on the other foot so it's important he wears the team he supports. The more flags and Arsenal tat the better.

Parking:

At the church there will be 25 all day permits that you can collect which will permit you to park in residents bays around the church and at our house. We'd encourage people to get cabs etc. where possible as on the day I think they'll be plenty of car sharing.

Food:

Please feel free to bring anything round in advance but bear in mind our crappy designer fridge is tiny so we can't keep anything fresh. As always at the Anderson's, you'll be well looked after.

The Burial:

This is probably the biggest thing, but one we really don't want people to worry about. Zoe summed it up nicely today by saying that 'anyone who had eaten out of our fridge or ever drunk our beer could come to the graveside'. To be honest, there's no right or wrong. If you feel you want to be there then come, this situation is so extraordinary no one know's how you'll feel on the day and Sonny certainly wouldn't want anyone to feel awkward. The only thing I would say is that It's going to be extremely sad.

After the service (which Ruby is calling the After Party) everyone is welcome back at the house and someone will be here from around 1.30pm with pots of tea at the ready. Again, if you're not going to the burial you may think it's more appropriate to go for a drink so we're back before you. The point is it really won't matter on the day, do what you think is right for you, us and Sonny. 

It goes without saying that these days are very hard. Everyone has supported us hugely and been incredibly kind. There will be things I'm sure we'd love to say on the day but won't have the chance. So it seems appropriate, through the blog that kept everyone involved, to thank you one and all. 

Sonny would have been proud (if a little cross at the attention). x

Gavin and Zoe: Arrangements

Its incomprehensible that we are having to do this but we've organised the funeral:

Service

Monday 16th May 2011

12pm

St Marys Church, Upper Street, Islington N12TX

Please come and bring your children. We'd like to see you there as we know how many lives Sonny has touched over the last eleven years and to thank you for all the strength and support you have given us.

From here we will take family and some friends to Highgate Cemetery for the burial.

There will be refreshments at Sonny's house after both services. We'll give out directions to those that don't know the home address on the day.

Many people have asked if we'd prefer flowers or donations to Great Ormond Street. The truth is we really don't mind, please do whatever makes you feel better. Either arrangements can be sent to the funeral directors:

WG Miller

93 & 95 Essex Road, Islington N1 2SJ

020 7226 3886

Gavin: the end

Sonny passed away this morning at 10.15. He was comfortable, peaceful and both of us were there to hold his hands. Sonny chose when it was time to go, not the Doctors, Consultants, Nurses or us.

Gavin: ICU

Sonny remains in ICU where his breathing is assisted by a machine. He's stable, but asleep all of the time so it's difficult to tell if he's making any progress. Tomorrow some decisions will be made around what next steps the teams think are appropriate. Tonight, we hang on in there.

Gavin: Not a great day

Sonny was taken too Intensive Care this afternoon as his breathing deteriorated further. We've had some pretty tough conversations about the outcome but he's in the right ward at the moment to give him a fighting chance.

Gavin: Two steps forward...

Sonny didn't have a brilliant day today and struggled with his breathing meaning his oxygen was whacked back up to the top levels. An X-ray has shown that fluid is collecting in his lungs again so we'll wait and see what happens.
Despite how tired and lousy this makes him feel, he went to bed chatting about football and snooker (his new found sport).
As I say, we'll see what happens.

Zoe: Phew

Sonny's breathing is much more relaxed and dare I say normal. I'm watching his chest move with the same intense pleasure I had when he was a baby.

Gavin: We're not out of the woods yet...

...but I reckon we're having a picnic on the edge of it. This was beautifully summed up by our consultant who came in, shook his head in disbelief, laughed and said 'looks like I can enjoy the rest of my holiday then'. I've booked myself in for heart failure on Monday and Zo's nervous breakdown is coming along a treat.

Zoe: The lengths kids will go to avoid watching a bit of history happen

I joined Gavin at the hospital very early this morning as Sonny's breathing took another turn for the worse. We fully anticipated another tap on his lung but thankfully he didn't need it as there wasn't much fluid just a partial collapse of his left lung. He's been very unwell today and watching him struggle to do the most basic of human instincts is excruciatingly difficult for both of us. Once again, Sonny is baffling the brilliant minds that hang out here as he miraculously started to feel brighter and needed less oxygen this evening. He's not behaving like he's got an infection as he's not spiked a fever. It could be disease but he's not got the other medical markers that normally go hand in hand with that. There's talk of it being GVHD but even this feels unlikely now as it doesn't usually dampen itself down like it appears to be doing without a big whack of steroids to halt it in its tracks. Which means it must be down to you lot sending over waves and waves of good vibes... keep em' coming please, they are all we've got for now.

Gavin: Who's that good looking young man?

Jack Wilshere, possibly the most exciting talent in football today came to see Sonny this afternoon. It was all a bit overwhelming for Sonny, who had lots of questions ready but couldn't quite get them out. Jack was a very lovely lad who, even when relegated to Sonny's third favourite Arsenal player behind Robin and Nas, immediately tweeted the picture and added 200 followers to Sonny in about an hour. He's so going in my fantasy team at the weekend.
The rest of the day saw Sonny remaining stable and despite everything, has moments of being chatty and funny. None of us, including the consultants, have any real idea of what's going on but it's fair to say it's not good. We're being led by him and making sure he's as happy and comfortable as possible.
If any other Arsenal players are reading, feel free to drop in. It was a better medicine than his err, medicine.

Zoe: Deja vu

Sonny was transferred back to GOSH yesterday where a CT scan indicated a possible fungal infection in his lungs. This is not good news. His comfort is our number one priority but we reluctantly agreed to a small procedure this afternoon to remove some fluid from his lung to make his chest feel a little easier and to allow the fluid to be tested. Gavin and I are numb. Things seem to be tumbling like a deck of cards at the moment and we are being forced to confront some very difficult emotions while our gorgeous boy watches The Champions League.

Gavin: Monday

Sonny was admitted to the Witt today with breathing issues. He's stable but being heavily supported by oxygen. We'll do our best to keep you up to date.

Gavin: Easter Sunday

We've had a lovely start to the day with a quick egg hunt and then more chocolate than you could possibly eat in a year laid out on the table for the kids. Thanks to everyone who sent stuff over, you're very sweet.

The PET results have shown there is disease progression which means despite radiotherapy, Sonny will need some other form of treatment. However, due to the TTP blood problems, nothing can happen until this is resolved. We're keeping everything crossed that this will begin to improve soon so we can discuss the next options. We should know more Wednesday.

Gavin: Ages ago...

... I remember a comedian saying "you know that feeling when you lean back on your chair at school and you go too far but just at the last minute you grab the edge of your desk and save yourself... I feel like that all the time".

Natch.

Gavin: Busy, busy, busy

Sonny, Ruby and Zo went to Essex today to play Monopoly in the garden with Nanny, Da and Cousin Alex as his bloods had held enough that he didn't need another transfusion. We've left Ruby there as tomorrow is a big day at GOSH where we get PET results and the next plan. Strangely, we're not spending the whole evening discussing the outcome like we used too as we realise that time will be the biggest deciding factor in the outcome.
Sonny and I then watched Man U draw against a plucky Newcastle and spent teeth cleaning time working out the points differential for The Mighty Arsenal to win the league.
Zo's finally sat down to salivate over the new show HUNKS on Sky Living, which is a bit odd considering I'm currently wearing a T-shirt that says 'All this and brains too'
Talking of hunks, here's the dynamic duo who single handedly raised £4k for Anthony Nolan. Nice one boys.

Zoe: I heart London

After popping into the Whittington this morning for a quick platelet infusion we popped into town to see what was happening. It was great and we came home smiling.

Gavin: And so it goes on...

The following is an abridged version of phone calls that meant I missed the entire Arsenal V Man Utd semi Final and the amazing Van Persie hat trick...

(Phone rings)
"Hi, it's the on-call consultant at the Wittington, I'm afraid that with a BP of 150 Sonny needs to come in"
"Ooookaaaay, but why? We all know his BP has been high for a few weeks and the Renal team at GOSH  have him on a programme so I don't want him in if you're just going to do obs"
"Right, well I've spoken to GOSH and they're adamant he comes in."
"Ok, I'll call GOSH and call you back"
(Phone GOSH)
"Hi, it's Gavin Sonny's dad"
"Oh hi, how is he"
"He's great, chirpy chatty and watching football"
"So why are you ringing if he's so good?"
"Because apparently you've told him to go into The Witt for a shot of Nifedipine which he can't have anyway as he has a reaction"
"OK, but I think he needs to be seen by a doctor"
"Why?"
"Because of his BP"
"...Which has been high for 3 weeks and he was let home by you with it at 162 so why the panic?"
"Right, err, ok, err, how about we give him another dose of Atenolol tonight and you take his BP again and he can stay home?"
"Fine, but I can't take his BP as I don't have the machine, although I've organised for a community nurse to be here at 9am to do it in the morning"
"OK, let's do that"
(Phone the WItt)
"Hi, we're giving him and extra dose and I'll bring him in if anything changes"
"Err, ok, but who have you spoken to?"
"The on-call BMT Reg"
"She was the one that told me to tell you that Sonny had to come in"
"I've convinced her he doesn't"
(slightly pissy now, adopts a condescending voice)
"So who would you rather ring in the morning me, the renal team or the on-call BMT Reg?"
"D'you know what, I'd rather ring none of you as it's my weekend and we're in exactly the same position as we were on Friday after spending a pointless 4 hours at GOSH and given a clear plan that you weekend Registrars don't know about and are only going on the fact that his BP is high rather than reading two foot of notes to get a fuller picture"
"I see... err, bring him in if anything changes then"
"No shit sherlock".

Gavin: Final push

Here's a short film. Watch it because it's fun and it raised £8k. You've all been amazing... just amazing.

Zoe: Better safe than sorry

As I was gazing at Sonny's beautifulness yesterday I noticed that his eyes looked really strange. One pupil was absolutely huge, taking up the whole of his eye and the other was the size of a tiny pin prick. Following this TTP blood disorder we'd been told to bring him in immediately if we noticed anything strange. We'd had a nod and wink about a famous young footballer visiting the hospital today and dangling this huge tasty carrot he agreed to go in for a quick once over on his one day off from treatment this week. Needless to say everyone went into overdrive when we pitched up and the day went from bad to worse when he got the news that the footballer had tripped over his laces in training and wouldn't be coming after all. An emergency CT scan showed nothing so plans were then made to keep him in for observation overnight as the neurological team weren't happy about letting him go home.  By this time it was early evening and an already heartbroken Sonny flipped out and poor old Ruby who'd been patiently waiting throughout the whole drama started to loose it too as we'd originally planned to be spending the day celebrating a friends birthday. My protests fell on deaf ears but luckily the cavalry arrived in the shape of Gav who managed to get the on call neurological consultant to agree to let him home based on the fact that nothing had changed for the worse in 7 hours and on the proviso he was back first thing so he could have an emergency MRI scan of his head and eyes. This scan was also negative which was a huge relief as he's got to have his PET scan at UCH tomorrow to see how he's doing following the radiotherapy. What with his body chomping through platelets at an extraordinary rate, high blood pressure and low hb, we seem to be lurching from one disaster to the next at the moment so some good news will be gratefully received.