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".


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"
"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.