Tuesday, 17 May 2011

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.







Wednesday, 11 May 2011

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

Tuesday, 10 May 2011

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

Friday, 6 May 2011

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.

Thursday, 5 May 2011

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.

Tuesday, 3 May 2011

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.

Monday, 2 May 2011

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.

Sunday, 1 May 2011

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.

Saturday, 30 April 2011

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.

Friday, 29 April 2011

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.

Thursday, 28 April 2011

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.

Wednesday, 27 April 2011

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.

Monday, 25 April 2011

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.

Sunday, 24 April 2011

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.

Friday, 22 April 2011

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.

Tuesday, 19 April 2011

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.

Monday, 18 April 2011

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.

Saturday, 16 April 2011

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".

Thursday, 14 April 2011

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.

Wednesday, 13 April 2011

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.

Monday, 11 April 2011

Zoe: On the day Sonny had yet more platelets




Yey... Sonny's NG tube was taken out of his nose today. I'll post a lovely photo of him soon I promise showing his handsome smiley face. Just don't stare ok.

Saturday, 9 April 2011

Gavin: You looking at me?


Admittedly, a lot of people take a look at kids in a wheelchair with a tube in their nose but it takes a special kind of twat to gawp for ages. Unfortunately, the lure of £4.99 capri pants seems to bring out the worst kind of people so we left H&M in tears yesterday as Sonny felt like some sort of Ripley's 'Believe it or not!' exhibit paraded around the badly dressed fat masses.
It weighed heavy on his heart as, at midnight we heard him sobbing in his bed. He told us 'he'd had enough' and that he 'wasn't sure he could carry on'. Of course, we did the right thing and told him how silly he was, carried him to our bed and comforted him as he watched Tiger Woods fight back to 6 under. When he was asleep we both picked up the pieces of each other's hearts ('is this yours love?'), until Ruby muscled in on the action and I ended up sleeping in her bed. 
Today was a six hour transfusion at The Witt where he narrowly shaded a three hour Monopoly marathon while I brushed off his blood pressure reaching 161/122 as the excitement of winning.
It's emotional, dramatic and tense. But will mean nothing if Arsenal don't win tomorrow's televised game. Then we'll really see some tears from him. 

Thursday, 7 April 2011

Zoe: Long and the short of it

Sonny spent 8 hours at GOSH today. An hour was spent with actual medical types and the remaining time was spent waiting to see what they thought. The good news is that his kidneys are functioning well. The bad news is that he's got to back tomorrow. Actually, its not that bad as they are at the very least concerned that he's getting the level of care he deserves but he's cross and fed up with it all and would rather not be there at all.

Wednesday, 6 April 2011

Zoe: Renally Retentive

When Sonny went to bed last night he had a tiny cold sore on his lip. This is because he's stopped a medicine to give his kidneys a rest. This caused a minor panic at 10pm as although pretty harmless to you and I he doesn't have the defence system yet to fight these blighters off and seeing as they are really good friends with herpes we decided to bother the on call registrar at GOSH. Poor lady had never heard of Sonny (who is she?) but we  agreed that it was ok to dab a bit of zovirax on it that I had hanging around in an old box full of plasters and cream for bee stings. Sonny woke up this morning looking like he'd been in a boxing ring. His eyes and lip were really swollen. It wasn't until I checked the tube of zovirax that I noticed it expired in 2007.

Anyhows, the cream might not be to blame as his feet were pretty swollen too and his weight had gone up by a couple of kilos which means he's retaining fluid due to low albumin because of all the protein being lost through his kidneys. With all this in mind and the fact that he also needed more platelets today he's off to GOSH tomorrow to get checked out by their renal team. Oh good, new people.

Tuesday, 5 April 2011

Zoe: Sofa so good


Sonny hasn't got enough energy to make it into school for the afternoon today so we are chilling out on the sofa building Plo Koon's Jedi Starfighter out of Lego instead (thank you Martin). Our community nurse has just left with some of Sonny's blood in her rucksack. Later on today we'll get a phone call with the results hopefully saying that yesterday's platelets are beginning to hold. He's having to have them replaced every 3 days at the moment which is incredibly worrying.  In the meantime, I'm making the most of his time on the sofa to pump him full of fluids as all the concern over his kidneys has meant that his daily fluid target has been increased to 2L a day. This gives his ears a break as I don't have to nag him to drink every 20 seconds if he's on the pump and it also means he can sleep in his own bed. To give his kidneys a break some of his regular medicines have been suspended and replaced with other medication to reduce his whoppingly high blood pressure. 

This turn of events has really freaked us out but I don't know if its an accumulation of worry or if we should be really worried. As always we'll be guided by Sonny and if it wasn't for the fact he's covered in bruises from the lack of platelets we'd be feeling more positive. I'm always at my most tetchy when his treatment is undecided. But, until his next PET scan we won't know whats lurking round the corner treatment wise. You can't help but worry that his damaged blood vessels are indicating that his young body's reached its tipping point from the assault course of chemicals and procedures its been on for the last 20 months but while he's still chirpy and busy building things we'll just have to keep counting the grey hairs.

Monday, 4 April 2011

Gavin: No change

Sonny's blood results are still going down, but slower than before. We'll wait to see if this is a trend or a blip but, at the moment he's still coming home which is all that matters. After his Platelet transfusion today Zo dropped him off at school where he said goodbye at the gate and walked in by himself because I think he needed to show his chums he's not some sort of invalid.
Unfortunately, this turned Zo's legs to jelly and she needed his wheelchair to get herself back to the car.
That's a joke, obviously. But if he still laughing, then so are we people.

Sunday, 3 April 2011

Zoe: Mother of all Sundays

Before all this we'd never been a couple thats been comfortable acknowledging popular rituals (we only had 4 people at our wedding) and Mother's Day has certainly never been high on my agenda. However this year I'm properly converted. We're home and despite a crazy blood situation Sonny was well enough to enjoy a proper family day out. Call it Mothers Day, call it what you like but we went out for ice cream, a whistle stop trip to the Foundling Museum c/o Jacqueline Wilson's Hetty Feather followed by a hilarious historical mystery guide to London road trip narrated by Gavin finished off with dinner at our local Italian. Perfetto.

Saturday, 2 April 2011

Gavin: Results

Sonny has a blood disorder called TTP. It means that the lining of his blood vessels are making the platelets clot and this in turn is shredding his red blood cells. This explains the rapid decrease in his platelets and HB despite transfusion and the effect it's having on his kidneys which is pushing his blood pressure upwards.
If it continues, Sonny will need a plasma exchange and potentially dialysis to take the pressure off his body. The glimmer of hope is that the readings that determine this new disease were marginally lower today than yesterday. We've been sent home with a watching brief and the mobile numbers of the various people involved.

Friday, 1 April 2011

Gavin: High drama, low bloods.

A hectic day saw Sonny at the Witt having platelets in the morning and then back to school for an hour doing a show and tell (three guesses what that was about). After that, he had to race back to the hospital to run some different tests on his blood as his own body appears to be eating up his platelets which is not good.
More bloods are ordered for tomorrow for another transfusion as his HB has also dropped despite a transfusion on Friday.
It's a worrying time. The delight of him being tentatively back at school is kept in check while they try to find out what's behind another very serious issue. There is no reason why his bloods should be dropping so rapidly after transfusion. We continue to hold our breath, whilst smiling.

Thursday, 31 March 2011

Zoe: Back to school

Sonny's been eating Chinese takeaway for the past week. Last night his fortune cookie was rather profound "A merry heart make good medicine". Earlier that day he'd been given the green light to go back to school to try and rid him of the blues. Sonny's consultant thought long and hard and although it was a bit of a shock as none of his numbers are way high enough he took the view that sometimes you've just got to get on with things. So folks I'm delighted to tell you that Sonny went back to school today. With a woeful platelet count of 8 (normal range is 150-450) he joined his class for the afternoon and absolutely loved it, it was like he'd never been away.

Wednesday, 30 March 2011

Zoe: Really Great Great Ormond Street

Sonny was seen back at the BMT clinic at GOSH today. It felt like he'd been away for ages and although they were all very lovely at UCH it was a relief to be back amongst some familiar faces. Although clinically he seems to be improving theres still plenty to worry about day to day. His blood pressure is way too high and his bloods are very low again despite the transfusion on Friday and additional platelets yesterday which is all a bit mysterious. Its too early for news on how successful his radiotherapy has been and until these results his next course of treatment is still very much open to debate. For now we'll let the doctors battle it out. He's home and happy which'll do for  us.

(Thank your mum for tonights title Louis ;)

Tuesday, 29 March 2011

Gavin: a big night

Sonny has gone to sleep in his own bed tonight as he managed to drink enough to only be on his pump until midnight. This means I get to sleep with zo for the first time in a couple of weeks. I'll miss sleeping with rubes in the spare bed... If nothing else it's a lot easier to get the duvet off her at 4am.
We're waiting it out by watching Lily Allen struggle to open her new shop on TV. To be honest, I feel much more relaxed about our situation now I know she's had to give up a multi-million pound recording lifestyle to piss it away on a folly... Currently she's struggling to get her head around a scotch egg and her sister has lost her 11th phone. That's perspective people.

Monday, 28 March 2011

Zoe: Prawn crackers

Yay, Sonny is starting to feel a bit more like Sonny. He's drinking more and he's even started to eat. Hilariously his tastes are quite peculiar insisting he can only stomach a takeaway chicken chow mein but we don't mind one jot and I'm happily tucking into his left overs as a takeaway is really pushing the boundaries of his post BMT diet to the limit let alone reheating them. Prawn cracker anyone?

Saturday, 26 March 2011

Gavin: Final push

The fantastic people I work with ran a charity event last night in aid of Anthony Nolan, raising £8,000 with a combination of auction, gifts and outright generosity. There are too many people to thank (you know who you are) but it's just fantastic and of course we're all very, very touched.

Andy who is running the marathon (see the post below) alongside Richard, needs to hit his target of £1,700. I have no doubt he'll achieve it, but if you want to help him and haven't already, please click here:

http://www.virginmoneygiving.com/andybamford

Zoe: New Horizons

Sonny has finished his radiotherapy. The celebrations had to be put on hold as he had to hot foot it to The Whittington for a blood transfusion but who knows... this could be the last one? Its been a gruelling few weeks with the symptoms of his cancer now being overtaken by the side effects of the radiotherapy which may well last for another few weeks. We'd hoped he'd be feeling much better at this stage but he's not really and he's feeling very down in the mouth :( We've been going for lovely walks in the sunshine to cheer ourselves up and it works I tells ya.  



For those of you not from London Village, UCH is the small green tower block above Sonny head. 

Wednesday, 23 March 2011

Sonny & Ruby: Happy 70th Birthday Da!


Tuesday, 22 March 2011

Gavin: Just giving

We've never wanted this blog to be about forcing charity down people's throats and, about a year ago I took the decision not to publicise my Sister's Marathon on here because I thought that this would be over in a few months and despite her huge undertaking of running 26 miles, it didn't really matter as she'd manage it no problem and boys that are only weeks away from getting better don't need charity do they, right?
Wrong. It's difficult to describe the feelings you have when the Anthony Nolan Trust sit you in a room and explain that they're doing everything they can to find a donor but there's no guarantee. It's probably harder to be on the ward with the parents who didn't find a donor to be honest.
Andy Bamford is the Managing Director of ThirtyThree in Bristol and Richard Clark is the Finance Director in London. Both are running the Marathon on behalf of Anthony Nolan and you can donate to either of them here:
http://www.virginmoneygiving.com/andybamford
http://www.justgiving.com/Richard-Clark3
I think it's appropriate now to say please give generously. Although give more to Clarky as at least he'll finish.

Monday, 21 March 2011

Zoe: Ohhh Matron!

Sonny's got just one week left of radiotherapy. I think they'll be pleased to see the back of us quite frankly. The hospital's Matron rang to get my side of things following a near meltdown from me on Friday. She was really lovely actually and very sympathetic to our frustration over the drama of trying to get a blood transfusion, the argy bargy over where he's going to be having his immunoglobulin and finding out from an administrator that he's got Paraflu. At least this explains the cough.  The radiotherapy is making him extraordinarily tired. I think the word is fatigued. Daily its a constant battle to get enough fluid into him but today the sun shone and that makes everyone feel better doesn't it.

Sunday, 20 March 2011

Gavin: Weekend round up

Quick one tonight as all is good in Anderson Towers. Rube's is upstairs in the guest room with a chum and Sonny is in my bed with Zo as he can't be left alone while his NG tube runs overnight, so I get the delights of the IKEA duvet and Taylor Lautner posters. David left a very thought provoking comment on the blog yesterday. I hope this helps you mate... click here.

Saturday, 19 March 2011

Zoe: Comic Relief

Ruby's school was closed today so she joined us for our daily schlep to UCH for radiotherapy. Both kids insisted on painting their noses red for Comic Relief. Ruby couldn't dress up as she had an audition later on in the West End (natch) but Sonny insisted on wearing pyjamas although it didn't quite have the LOL response seeing as we were in a hospital. Doh! I thought the whole thing was hilarious.

Thursday, 17 March 2011

Zoe: Help

Much appreciated offers of help flood in everyday but its very difficult to think of what anyone can do. At last here is something you can all get behind from the comfort of your armchairs and it really may help. Please click on this link to help save the NHS. It really is an extraordinary concept that works incredibly hard and I can't begin to imagine the horrors we'd be facing without it.

http://www.38degrees.org.uk/NHS-petition


Thank you

Wednesday, 16 March 2011

Gavin: We're back

Right you lot, enough of this moping around. Sonny's coughing less, his temperature is down to 37º and more importantly we look like we've dodged the nights in hospital. Today's radiotherapy went well and I haven't said 'so what part of putting the child first do you think you're putting first at the moment?' to any knobhead doctor who's only just learnt which ear the stethoscope goes in. Yeah, like I say... we're back.

Tuesday, 15 March 2011

Zoe: National Census

If having to swap doughnuts for Dioralyte wasn't bad enough it was compounded by having to tick the health 'very bad' box for person 3 on the National Census today. Nuff said.

Monday, 14 March 2011

Zoe: Sniff

Sonny's got a cold. He hasn't had one for years and on top of everything else its making him feel really grotty. Although forbidden (as it masks a temperature) I managed to beg some paracetamol from our kind and practical Macmillan Nurse. I really hope he wakes up feeling a little better as he's planning a trip to Krispy Kreme Doughnuts as a little reward for scoring 100% in one of his entrance exam papers... Not only is he gorgeous but he's a genius to boot.

Sunday, 13 March 2011

Gavin: This is not living

Sonny and I went to the RAF museum at Collindale today. Before we go we need to pack boiled water, meds and a crash pack. I took a pair of pants too, just in case. I wheeled him round amongst all the other families who looked guilty when they stepped out of the lift. When Sonny announced he 'was hungry' I shot to the cafe. The lone packet of hula hoops weren't right, so I was then hoping he wanted to leave soon so we could find him something. Tesco's was shut. Waitrose was shut. Sainsbury's on Upper Street was open but didn't quite have what he wanted. We bought some chicken slices and malt loaf. The chicken was wet and he didn't want it, so I cooked him some bacon and he loved it. I melted with relief. He wanted another slice but we knew he'd throw it up so I made an excuse. Zoe was out with Rubes as we need to make sure she's doing normal stuff. This means I don't get to see Zoe for most of the weekend and then it's back to work tomorrow. Now the kids are in bed we're sorting out his drugs and the logistics of getting him to UCH for 8am for his tranfusion. Ruby had diarrhea tonight so we're talking about what we do with that and keeping a watchful eye. We've poured a glass of wine but not too much as the car is packed with his overnight stuff just in case.
I just carried Sonny to bed. His legs are stick thin and his face is white with big red bags under them. He couldn't face cleaning his teeth as his NG tube makes him feel sick and, as he's just had eight syringes of medicine I couldn't risk it. I put his cream on his chest (to stop it flaking through radiotherapy) as he held his Hickman line out of the way. He said 'I had a brilliant day dad' and I said 'Yeah, so did I big man'.
This is not living.

Saturday, 12 March 2011

Zoe: Weekend Ranting

Its taken 24 hours of ranting and negotiation to get a blood transfusion organised for Monday at UCH. Sonny's hb needs to be around 12 for radiotherapy and its fallen below 10 so he needs a blood transfusion. However, despite these being pretty routine for us now its been like pulling teeth today to get one organised with UCH (who are presently in charge of his care) not quite grasping 'the child first and always' motto of GOSH. Baring in mind that he's attending hospital 5 days a week it seem a little unfair to drag him into the Whittington on a Sunday for a 6 hour procedure.   Some silly doctor tried to fob Gav off with some idiotic nonsense today hoping that he'd believe his bullshit... oops.

Friday, 11 March 2011

Zoe: Sonny's week in pictures









Tuesday, 8 March 2011

Gavin: Champions league, you're having a laugh...

Tense? By god it was, but once again, the sheer quality of a side like Arsenal shone through. 16 attempts on goal to Barcelona's zero to me spelled out the result... there was only one team that could win this and with over 70% of possession it became almost embarrassing for our Catalan friends. Who knows who we'll meet next, but we're hoping it's not Bolton or Stoke.
Sonny loved it, sipping coke and even eating a pancake in celebration. He'd also like to say a word for his mum on International Women's day.

Thankyou.

Monday, 7 March 2011

Zoe: Thumbs up

Today was spent updating GOSH and UCH on Sonny's weekend. The good news is that they think his poorly tummy was due to a bug rather than the effects of the radiotherapy, which seeing as he was only two days in would have been a disaster. His NG tube is now firmly back in place too thanks to a visit from the Community Nurse. At UCH the radiotherapists keep apologising for how long its taking and assure us that it will get quicker. This is astounding seeing as the whole thing from parking the car takes less than half an hour from start to finish. Sonny has downloaded some tracks onto his ipod which he now has blaring out whilst he's alone in the DANGER DO NOT ENTER SCARY ROOM FULL OF LASERS whilst I just tap my foot along to the beat watching his thumbs on a tv screen which are the only things he's permitted to move in case of distress.

For a laugh, try not moving a muscle to Hey Ya, by Andre 3000. My kid is incredible.

Sunday, 6 March 2011

Zoe: Drum Roll

Round of applause for Sonny.  In spite of having shocking diarrhoea and throwing up his NG tube late this afternoon he's managed to stay at home. It sounds like he's had a terrible day but he really hasn't. Despite all the above he's feeling ok and he's been in really good spirits. We are so relieved that we didn't start the antibiotics. We'd never be so maverick to take any risks with him but I think waiting was a good call last night and we couldn't have done that without the trust of the Whittington. His temperature hasn't gone above 37.6 and as long as we keep on top of his fluids we know he'll be ok. Its tricky being at home when he's so poorly however, we've learnt a lot along the way and know when and when not to panic so for now we are happy muddling through.

Saturday, 5 March 2011

Zoe: Saturday Night Fever

Sonny was a little red cheeked when I left the house this morning to begin Ruby's marathon of activities. I got a text from Gav around 4.30pm saying that his temperature was up to 37.7 and he'd had five bouts of diarrhoea. After several phone calls, one of which is now to UCH to add to the complications we decided that we had no option other than to take him to The Whittington to get checked over. Sonny was very upset and even more so when his temperature reached 38.5, the point where a 48hour dose of antibiotics is the only course of action. However, the nurse that took the temperature was a little slack in telling the doctor so by the time things started to get moving I noticed that Sonny had become a little chattier and dare I say it, a tad demanding in his wants from home... The thermometer showed his temp was on the way down and as soon as it got below 38 he was allowed home. And thats where we hope to stay.

Friday, 4 March 2011

Gavin: Quick one

Sonny ate a pancake for breakfast and did alright at Radiotherapy today. Tomorrow I either wheel him to cyber candy on Upper Street and eat posh pancakes in The Diner before coming back to sit on the sofa and watch Soccer Saturday with him or, sort out the loft. Hmmm... it's a tough one.

Thursday, 3 March 2011

Gavin: The awfulness of radiotherapy

Me: Hi mate, how was it?
Sonny: Alright actually
Me: Cool, so you weren't worried?
Sonny: No, it was ok. I felt like I was in a transformers movie
Me: Excellent (relieved laughter)... How was being on your own, that was what mum was so worried about?
Sonny: Oh fine, she had some walkie talkie's and she read to me as I can't talk back but I asked her not to do it tomorrow as it was a bit annoying.
Me: Ha ha, nice mate. Love you.
Sonny: Yeah love you too dad... What time you coming home?

Tuesday, 1 March 2011

Zoe: Tough Times

Sonny spent the day having his three weekly immunoglobulin infusion at The Whittington. Tomorrows treat is a blood transfusion and he begins radiotherapy on Thursday. The whole of Sonny's year group is away having fun at camp this week. Sonny is really sad that he's not there with his mates being a boy, larking around and trying new things for the first time.

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.

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'.

http://twitter.com/sonnyvanpersie

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.