Friday, 31 December 2010

Gavin: Errr, live at the O2

Sonny is quietly giggling at Michael Mcintyre while he performs at the O2 in a Great Ormond Street event. It's all a little depressing, watching a charity event whilst you're in the hospital they're raising the money for. He's had a pretty good day today and the scan results have shown nothing new has grown, so we continue to hold our breath waiting for something to happen. I'm now off to get another glass of squash so I can wait up until midnight. I couldn't give a toss about the New Year, but it's when I have to give him some pills.

Thursday, 30 December 2010

Zoe: Tonight at the O2

Sonny's oxygen requirement has been getting less and less. This evening for the first time since arriving here he has gone to sleep without needing any at all. Today he had a CT scan of his chest and abdomen and tomorrow maybe somebody can tell us what all this means.

Wednesday, 29 December 2010

Gavin: The unkown

Sonny continues to dumfound the doctors by remaining stable. His vitals are good and he was awake for longer today than he has been, even staying up to watch the Arsenal highlights with me. However, it's an impossible situation to feel uplifted about, as no one is expecting Sonny to simply get 'better'. We're waiting for something to happen with his lungs one way or the other that will define what happens next.
We've said all along that we'll be lead by Sonny and how he is, as we know him much better than what's lurking in his chest. Tonight he told me I was mad for subbing Gerrard into my fantasy team and then gave me a smug look when Liverpool lost to Wolves. My heart nearly melted.

Tuesday, 28 December 2010

Zoe: Holding our nerve

Sonny's oxygen requirement has stayed the same which is a good thing and today's x-ray showed no change.  He hasn't eaten anything for over a week now so he was started again on TPN (liquid nutrition) and I'm wondering if this has given him more energy. Today he's been awake for much longer periods and he even managed to build a little bit of Lego and eat a custard cream and a ginger nut biscuit.

One of last nights BMT doctors who has also worked extensively in Infectious Diseases doesn't think he's had/got meningitis. He's more convinced that the seizure and the muddled brain are to do with the DLI. (The Infectious Diseases people would disagree). The methods they are using to treat Sonny are cutting edge and on the extremes of medical possibilities and we are just having to sit tight and go with it, accepting that we may never have all the answers. Before entering into this we were warned that it was going to be bumpy. Its early days but there were less bumps today.

Monday, 27 December 2010

Zoe: 24 hours

It's not been a great 24 hours.
Sonny has grown another lump in his chest and it has partially collapsed his left lung.
He is on oxygen all the time and he's incredibly tired and isn't having a very nice time.
Sonny's temperatures are being controlled and despite the oxygen requirement his stats are stable.
When he's awake he's making sense and there are small moments when our boy is back in the room.
The new lump could be disease. The new lump could be an infection (not likely given the antibiotics). The new lump could be the graft fighting his disease. No one can be certain. The only certainty is that if it gets any bigger or if more lumps grow then he's in serious trouble and at risk of going to intensive care. They think that this is on the cards.
However the mass we talked about last week hasn't got any larger. In fact it could be getting smaller which means the donor cells are working and attacking his disease. But again nobody knows and there is no way to know.

Gavin and I have had some incredibly difficult conversations with the team about their realistic expectations. They are incredibly doubtful that it will work... but there is a glimmer that it might.
These conversations are immense and immensely difficult to comprehend and process let alone make decisions.
For now we have to hold our nerve.

Saturday, 25 December 2010

Gavin: Bing Bong Merrily on high

It's never anyone's intention to spend Christmas in hospital, but all things aside it was a pretty good day. Sonny was much more coherent but is still pretty rough and managed to be awake for only around three hours. Both kids were amazing though, with Sonny putting on a brave face for his sister and Ruby acting like turning off the bong of the sats machine while eating packet Turkey breast was absolutely normal.
The ward made a huge effort by buying a remote control car for Sonny plus presents for Ruby, Zoe and I and laying on a big buffet in the play room. So alongside the generosity of friends and family and a really cheerful and positive vibe from the nurses it wasn't such a bad time. Well, you know what I mean.

PS: From Italy to Ireland and everywhere in between, we really can't thank you enough for all the presents sent. It took two trips just to get them all in the room and made it very special for him. You all know who you are.

Friday, 24 December 2010

Gavin: The facts as we know them

Sonny isn't improving but he doesn't seem to be deteriorating either. The main concern, alongside a very high pulse and temperatures is his brain function, which wavers between being lucid to forgetting what happened an hour ago. Sonny has been this ill before, but the change in his coherence, the odd things he's saying and watching him trying to comprehend why he can't put a sentence together is a new level of distress for us all. We are reassured that the EEG he had today showed no signs of damage and Infectious Diseases are busy trying to grow precisely what has caused the meningitis so they can treat it acurately. There is the possibility that this is being caused by his underlying disease which, although could potentially be 'switched off' with more chemotherapy, will also kill all the cells that have been infused to fight the cancer throught the DLI, putting us back to square one.
Our consultant feels that as the lump in his chest isn't growing dramatically and that his EBV levels are slowly coming down that there are signs that the DLI is working and we should therefore continue as we are despite how awful this is as it may be our only chance. Unfortunately, as the only child to ever undergo this treatment that is pushing the boundaries of medical science, they have no frame of reference. We are reassured that he isn't in ICU yet and he has bouts of talking about Arsenal, but we've also been told that it is now 'appropriate to be very concerned'.
The picture below demonstrates the level of attention he's receiving on an hourly basis. Our nurse today decided to see if Sonny and her could read each others minds by attaching the EEG probes to each other's temples (no small task). The clinical specialist, a busy lady who had a screen full of other kids she had to do today played along for the 15 minutes as our nurse thought of a question and Sonny mumbled answers. If any nurses are reading this, take note. This is care.

Thursday, 23 December 2010

Gavin: Results

Sonny had a lumbar puncture today which has shown he has contracted Meningitis. As you can imagine this is a huge shock. They have started treatment and, despite feeling obviously terrible he is stable. We now sit and watch to see what happens next.

Wednesday, 22 December 2010

Zoe: Knife Edge

Its been a hellish 24 hours. In fact, too awful to go into much detail.

Sonny's had another seizure.
It was a shock and really scary.

He had a reaction to the anti-seizure medicine.
It was really scary.

He had to have a CT scan.
Waiting for results is scary.*

More tests follow. They are not nice tests. He has to have his head wired up to a machine. He has to have a lumber puncture which hurts and involves a general anaesthetic.
Ouch and more scary waiting for results.

His temperature is really high.
Its vile watching your child be so ill. Its traumatic making him have these tests.

It will be Christmas soon.
All the doctors will be at home pulling crackers and watching EastEnders.

The PlayStation internet connection has stopped working.
The people who can fix it won't be back until January.**

*So far all results are negative and he's showing no signs of neurological damage.
** This is all Sonny cares about no matter how rubbish he's feeling.

Tuesday, 21 December 2010

Harry Hill: Fight

Gav and I just blogged at the same time about the same thing. But which is better. There's only one way to find out...

Zoe: Waiting Room

Sonny has now been back in hospital a week. Its been a strangely uneventful time which in many respects is a relief but also hard to get our heads round too. It feels strange to know that the disease is coursing through him and this time we just have to sit back and let things slowly unfold. They don't want to give chemo as this will stop the donor cells from working so its just a matter of riding the waves of temperature and all that comes with it waiting for the arrival of GVHD. He feels really lousy today so something might be happening... I possibly suspect it might be. He doesn't seem to be getting dramatically worse disease wise so there could be some kind of magical fight happening in there... who knows. No one here thats for sure but lets wait and see what Santa brings.

Gavin: Still waiting

Sonny is doing ok. He's still spiking temperatures and feeling pretty sick but, for the most part is ok. Just ok though, not brilliant or getting better or any of those words that we'd all like. It's ward round today so we may know a little more although I suspect they'll tell us to keep hanging on to see if anything happens.
With just 4 days to go before Christmas, we're not sure what Santa's going to bring. But I suspect it will need to fit through the hospital door.

Sunday, 19 December 2010

Gavin: Must be a new protocol...

"Yeah, I've written you up to take two cats twice a day with food and a dog on Friday only, alright?"

Friday, 17 December 2010

Zoe: Tower, this is Ghost Rider requesting a flyby

The Red Arrows paid a visit to the ward today. Sonny thought they were simply AWESOME and I learnt that they really do say 'tally ho' when they see the enemy.

Thursday, 16 December 2010

Gavin: Little wonder

Considering Sonny has lived this for nearly a year and a half, it stands to reason that he's well versed in the big C. Rather like how jealous we all are of those kids who speak two languages because the mum is French, Sonny is so fluent he can spot a pre-packaged syringe at ten paces. The nurses on Peter Pan last night were just lovely, in fact they were super lovely considering the last thing they wanted was a cancer patient but, rather like working on a Mac and then being given a PC, they know the fundamentals of looking after oncology patients, but have none of the learned knowledge or short cuts. To put this little story slightly into context, I reckon even at a low estimate, Sonny has had over a thousand infusions through his Hickman line and at his peak, had six syringe drivers pumping in 18 per night (a record at the Wittington I'm proud to point out)...

Sonny: What's that?
Lovely nurse: This is called a syringe driver, it slowly pushes in the medicine.
Sonny: Yeah, yeah I know, but what's THAT (points to small syringe).
Lovely nurse: This is piptazobactum, it's an antibiotic that will help with your tempera...
Sonny: YES, I know what it is but what's THAT (again points to the small syringe).
Me: It's just a different size mate, don't panic it's all the same (knowing full well what he was getting at but making sure I didn't tell lovely nurse her job or she may not be quite so responsive at 4am).
Sonny: But the small syringes will oclude?
Lovely nurse: You can't put anything bigger down a Hickman line, I've checked on the system.
Me: Just so you know, you can... (at this point I'm not sure whether to put my foot down and get her to change it or that will lead to a night of bleeping alarms... I decide to let her try).
*Bleep... Occlusion... Bleep... Occlusion*
Sonny: Would you like me to lie on my other side side to try to unblock it? (Rolls eyes subtlety at me).
Lovely nurse: That would be brilliant Sonny.
*Bleep... Occlusion... Bleep... Occlusion*
Lovely nurse: I think the line's twisted (untwists a not twisted line).
Me: (rolls eyes subtlety at Sonny).
*Bleep... Occlusion... Bleep... Occlusion*
Lovely nurse: I think I'll try a bigger syringe.
Me: Yeah, isn't it annoying when that happens eh, doing it by the book and the stupid machines don't like it... bloody things!
(nurse leaves room)
Sonny: I told you.
Me: Yeah alright, but we need to play the long game here. If you're stuck here for a week the last thing we want to do is tell her job and piss her off... trust me on this one.
Sonny: Good call... did you like my 'lie on the other side' line?
Me: Yeah. Good lad.
(Nurse draws up larger syringe and plugs it in)
2am: No bleeping

Wednesday, 15 December 2010

Zoe: No room at the inn

Sonny spent last night in the Whittington and we made our way over to GOSH this morning to see what his consultant had to say about everything. He agreed that Sonny wasn't right but they are adamant that nothing should change for now and that we should stick to the plan and await the GVHD... at GOSH. This caused the bed managers no end of headaches today as they are completely full and officially are not accepting any patients. In the spirit of Christmas a kindly inn keeper (Peter Pan Ward) found us some room in their stable for the night. I don't think they are used to kids as large as Sonny as they only had a manger but they didn't mind him swapping their straw for his cozy duvet. Meanwhile his stoic star shines brightly.

Tuesday, 14 December 2010

Gavin: Tuesday

Sonny's temperature going up and down is a sure sign of something wrong. Normal illnesses will grow a temperature and sustain it until action is taken. Bouncing around from 36.3º to 37.8º may sound marginal but to us it's the equivalent of a large sign saying 'Yep, pack a bag'.
So after having his immunglobulin at the Wittington today and rocketing up to 39.5º the decision was taken to start intravenous antibiotics and keep him in. Zoe has done an amazing job of hustling the right people at GOSH to get a PET scan organised soon that will tell us what we probably already know... his disease has flared up again.
We could be wrong. He's got a cold, it could be GVHD or it could be a reaction to to immunoglobulin. But to be honest,  the straw jar we've been clutching at was empty some time ago.
Here we go again. Wish him luck.

Monday, 13 December 2010

Gavin: Life begins at...

It was Zoe's birthday this weekend. I'm not really meant to mention it but I'll face the consequences. Sonny picked up a cold on Friday so we were on tenterhooks waiting to see if it would go anywhere while Zo put her lippy on. Thankfully, we avoided party hats in the Shittingdon and had a lovely night drinking cocktails and eating lovely food. Thanks to all those who made it special... you know who you are.
Sonny's cold also seems to be getting better. A teetering temperature had us on the orange squash last night just in case, but he's woken up brightly with a 36.4º (good, in case you were wondering) and is off to the pictures again to watch Narnia. Although I'm not allowed to call it the 'pictures' apparently as that's not down enough with the kids. I'm making them call me 'Daddio' as a punishment.

Friday, 10 December 2010

Gavin: If I can dream (1990)

Sonny has some redness appearing on his hands. We're not sure whether we're imagining it, it's because of the cold or the GVHD is starting. In the meantime, we're watching Graham Norton interviewing Barry Manilow. Christmas is just around the corner (2008), but Somewhere in the night (1978) we're both thinking Let's hang on (1981), because we're certainly not saying You're looking hot tonight (1984). Could it be magic? (1975)

Thursday, 9 December 2010

Zoe: La la la (fingers in my ears)

Sonny is going to GOSH once a week for clinic. As well as being given a once over by his consultant this is where we get to bump into familiar faces who we've got to know during this nightmare all our lives have become. This is a double-edged sword because as well as seeing people who are doing well you also get to hear of others who aren't doing so well and sadly even worse. However, our lad is doing ok. For once, he seems to be doing what they expect and the clever people remain convinced that we are going to see GVHD soon.  Time will tell.

Tuesday, 7 December 2010

Gavin: It's alright everyone...

I'm feeling better.

Monday, 6 December 2010

Zoe: Upstairs, Downstairs

Gav is being held prisoner in the bedroom. With relief readers you'll be relieved to hear he's got a nasty bug and I'm not about to reveal any seedy secrets. I think he's going to pull through though. At 2.15pm he managed to send a text demanding toast and now we are all receiving regular updates on his recovery status. I have to admit I've been a bit lacking with the sympathetic, nursey, healing skills I seem to have perfected with Sonny, prefering to knock and leave any offering outside for fear of the whole house going down with it. Gav is as strong as a bear, I dread to think what this would do to Sonny.

Sunday, 5 December 2010

Gavin: Sunday Haiku

He sleeps quietly
after a big sleepover
no rash or temp yet

Friday, 3 December 2010

Gavin: In amongst it all...

We're on a knife edge waiting for something to happen. But despite that, we're having the best time with Sonny and it's really nice. From pizza out to two cinema trips, they both came and picked me up from work today and our lovely receptionist stuck him in the Little Meeting Room so he wasn't exposed to the chorus of hacking creatives on my floor. After doing his best Seigneur de Sucre impression, he wrote a diagram on the flip chart with drawings that said 'Meet client. Win business. Buy them beer'. Not quite the lesson in business I wanted to hand down but hey, I supose it's bought me a house in Italy.

Wednesday, 1 December 2010

Zoe: Mystic Pizza

Sonny was instructed by his consultant at clinic today to go out a grab a slice of the action. He hasn't eaten out in this fair city for 6 months and he didn't need telling twice. After dropping round to Sonny's favourite local haunt to explain our absence and all the hygiene requirements needed to win back our business the manager dried his eyes and welcomed us back with open arms. Bellissimo.

Tuesday, 30 November 2010

Zoe: Sshhhh (part two)

Sonny sat the second part of one of his entrance exams today. His bloods have taken forever to recover from the chemo giving him a banging headache so we haven't been able to resume them until today. He's exhausted but feeling very glad its all over... until the next one. Why they can't just sit one is beyond me but hey I gave up trying to make sense of things a long time ago. 

Monday, 29 November 2010

Zoe: Haircut 100

Sonny's got a new look - whatcha think? We've got an 80s revival going on. Watch your back Terry Hall, there's a new kid on the block.

Sunday, 28 November 2010

Gavin: Tick tock...

The wait for the inevitable temperature/rash/diarrhoea looms large every day. But I think the fact that Sonny is home and in good spirits is doing a good job of hiding the fear of being back in the Shittington, There isn't really anything more depressing than being there, waiting four or five days for the ambulance to GOSH whilst trying to find things that his chemo damaged palate will cope with from the local Co-op. It's Zo's birthday in a couple of weeks and then the small matter of Christmas, followed by Ruby's big day and then my not so big one. Last year we managed the end of the year fun but he was in for January so poor old Rubes had the single parent Birthday experience and I had half a Stella in the pub with my wife on mine.
Maybe this will be it. Maybe one of these 40 million cells will eat up the cancer and we'll always just be waiting for something to happen over the next few weeks, then months, then years until Sonny leaves for Cambridge and he's in charge of his illness. I hope so. Forget cancer and all that, the camp beds in the hospital play havoc with me back.

Zoe: Nippy Nora

Brrrrrr... its fresh outside. Stayed nice and cosy today with a warm dose of Harry Hill, X-factor and a 36 goal fest Match of the Day. Toastie.

Friday, 26 November 2010

Gavin: Bob breen super machine

Rube's had a kick boxing presentation tonight. She came back with a trophy for kicking and drew blood from her instructor. Sonny went to Camden via the canal and ate a crepe (please wash your hands) and bought new trousers. It looks like there's only one person in this family who's actually doing anything normal (spending the afternoon in the Three Kings with my chum Andrew and getting a bit tipsy). What, you lot don't spend the afternoon in the pub? Jesus, get a proper job...

Thursday, 25 November 2010

Zoe: Get Lost Lady

Sonny is showing teenage tendencies - sleeping in, eating cereal and generally finding me really irritating. Can't say I blame him though when my only topic of conversation is asking him how he feels, if he wants to eat anything and getting him to lift up his shirt so that I can check for any sign of a rash.

Wednesday, 24 November 2010

Zoe: Weird Science

Today was a bit of an anti-climax really. The tiny weeny 1ml syringe you can see being pushed into Sonny contains over 40,000,000 donor cells and took all of three seconds to go in. For those of you interested in the clever stuff he needs 1 million cells per kilo. The cells this time around are just Tcells or CD3 if you're a really clever medical talking person like me and they are the type that like to make GVHD (graft v host disease). We've been told not to expect to see any signs of GVHD for at least two weeks. And that guys and gals is it. Better get Christmas shopping then.

Tuesday, 23 November 2010

Zoe: Ready. Steady. Go.

Sonny spent yesterday curled up on the sofa. He was meant to sit the second part of one of his exams but it can wait. All his bloods are really low and he's been having nose bleeds despite having platelets on Friday. This is all from the chemo so today he had more platelets followed by a blood transfusion and he's now feeling much better (no thanks to Arsenal, hello guys did you not get our memo?). Big day tomorrow. He is back at GOSH and his donor cells are being defrosted ready for him to receive them as an outpatient. We are all feeling rather tense about it as we don't know what's going to happen but we are as ready as we'll ever be so bring it on.

Sunday, 21 November 2010

Gavin: The War of the Roses, Celebrations and Quality Street

It was Sonny's party last night which went pretty well I reckon. Seven boys with large plastic guns setting up and attacking base camps, then frantically running round collecting the 1p bullets in case they lost any. Luckily, all Sonny's friends are lovely boys, so there were no tears, no tantrums and no vomming after too much cake. He had a great time and despite only getting four hours sleep seems very perky today. It also capped off an amazing performance from The Mighty Arsenal who, despite being two goals down at half time, 'outgunned' Tottenham to win 3-2 at The Emirates. That will put a serious dent in their aspirations to finish in the top four this year I can tell you.

Saturday, 20 November 2010

Zoe: Under seige

Help... we have been taken hostage by 7 small boys. They are armed and very dangerous. If we survive we'll post pictures of our ordeal in the morning.

Friday, 19 November 2010

Gavin: Stand up, if you hate cancer...

Sorry... what was that? You're wondering what we're doing for Sonny's party tomorrow night? Well, it's 10.50pm and we've just finished making a cake that looks a bit like a gun, Zo's been to the National Army Museum (N.A.M) for party bag gifts and the lovely Ocado man has delivered 78 bags of crisps and a packet of hot dogs.
It's a big day tomorrow for many reasons. Sonny's bloods are at their lowest so he went to the Shittington for a quick tranfusion tonight to get him feeling better for his party. He takes the second part of his Entrance Exam in the morning and more importantly, The Mighty Arsenal take on Tottenham at Midday.
Interestingly, Tottenham are quite like his illness. An ever present annoyance that won't seem to go away how ever many times you beat it.
The new cells go in next week. We're hoping for a Van Persie hat trick rather than a Ledley King*

*Mum, that means we're really hoping for a great result rather than them not working properly despite being quite important in the big scheme of things.

Thursday, 18 November 2010

Zoe: Sshhhh

I'm having to write this very quietly... Sonny is in the kitchen sitting the first of his entrance exams for secondary school. GULP.

Wednesday, 17 November 2010

Happy Birthday Big Boy

Tuesday, 16 November 2010

Zoe: Homework

Sonny has felt rather rubbish today thanks to yesterday's chemo. He could hardly move for most of the day and when he was awake he was bored, bored, bored. Luckily, the healing powers of PS3 were working by this afternoon and this evening he even felt bright enough to try some homework set by his school this week (thank you for telling him about it Eva). Ruby had the same project to do so they decided they'd submit a joint entry. Their brief was to make a shelter for two Lego people that could withstand 500g and 200ml of water being tipped on it.  Thinking it could get ugly, I hastily removed myself from the situation by making a cake for Sonny's birthday tomorrow. Here are the results... looks pretty good to me and Ruby informs me its been scientifically tested for up to 700g (two DietCoke cans) and the sloping roof should keep the nice Lego folk dry. You'll have to wait for cake...

Monday, 15 November 2010

Gavin: Happy Birthday Nanny

Sonny endured the drudgery of chemo today but was brightened up by Nanny and Da coming up to visit for her birthday today and cooking us all our tea (which was very kind considering it was her special day). Ruby is still struggling to sleep (can't remember if you all know this), so went to bed with some special CD's that are meant to help. They do seem to have worked despite us both giggling at the "you're falling asleep under the finest silk sheets" line on track one. "You're falling asleep under IKEA’s finest" would be perhaps be more appropriate but hey ho. Anyway, this is all pretty dull so here's a picture of the kids toasting marshmallows over a tea light (IKEA again) as I couldn't be bothered to make a fire for them. I'm not sure why Ruby looks like a prisoner in a Texas jail, but dang girl, that hair be banging.

Saturday, 13 November 2010

Zoe: Fight night

The last few months have taken their toll on all of us and Ruby has been suffering terribly with sleepless nights. Despite surviving on only 4 hours she still has bags of energy and tons of enthusiasm for anything and everything. Check out the little green stripe on her belt... she was graded today in kickboxing and came out top of her class. Very handy for this particular corner of London village.

Thursday, 11 November 2010

Sonny: An author in the making

Christmas Warehouse Heist

In the late hours of downtown Chicago the notorious criminal Jim Thefty (or known to you and I by the name of Skinny Jim) is writing plans for his big warehouse heist that he and his partner Bob Flab (or Fat Bob) are going to attempt on the 24th of December, Christmas Eve. If the heist goes to plan the pair would obtain over $10m in jewellery and antiques.
Suddenly, a large gust of wind swept up one of the papers and it flew out of an open window. Jim, who was out of the room having a toilet break, didn’t notice that one of his papers was missing and continued to write up his plans.

The next morning, Inspector Steve was enjoying his Christmas holiday and was taking Chopper the Dog for a walk. As they neared the end of Alcopone Park Steve gazed at the battered hut in the distance. Unaware that the hut belonged to Skinny Jim he passed it without giving it a second glance. But then, Chopper the Dog began running towards it, barking wildly. Now, Chopper is a very well trained police dog and only barked when he smelt something suspicious. Steve, naturally followed to see what he had found. When he arrived at the hut Chopper was standing over apiece of paper with one paw on it, like he was making sure it didn’t blow away, With the words ‘Big Heist’ written on it.

Skinny Jim and Steve had met before. And Jim had cut off Steve’s left thumb. During their encounter, Jim had been wearing bright green nail varnish and some of it had spilt on Steve’s suit jacket. Steve had never been able to get the stain out and today he was wearing that same jacket.

Steve picked up the piece of paper and examined it carefully. Just as he was putting it in his pocket to take to the police station he noticed a green smudge on the corner of the paper. Immediately he remembered the stain on his jacket and compared the two. Sure enough, the two shades matched and Steve new that Skinny Jim was behind the heist.

Big Heist
·      Get job at warehouse
·      Get clearance for Bob to load after 8pm
·      Mark all the goods worth taking
·      Stay in after hours and collect marked goods
·      Load goods into Bob’s truck
·      Head north for Canadian border
·      Cross border at midnight
Day 2

·      Buy up expensive land
·      Search for great grandfathers lost treasure

Once treasure found…
·      Move to Hawaii and enjoy rest of life showering in cash

Steve took the plans back to his apartment and set them down on the table. He spent the rest of the day examining them and came to the conclusion that he should take them in to the station but when he stepped outside it was pitch black.  He took a quick glance at his watch and realised that he had spent the entire day looking at the papers and it was now 23:00. He knew that by now the Chief of police would have gone home and he would get stuck trying to explain the heist to a teenager doing his or her last shift before they get to take Christmas off.

When Steve woke up the next morning he did what he usually did. He poured a bowl of food out for Chopper, who came running as soon as he heard the rattle of it against the metal of his bowl. Then he made himself his favourite breakfast, a bacon sandwich, and sat down at the table with the paper.
He had forgotten about the papers he had found the day before and was just leaving his apartment with Chopper to go for a walk when, out of the corner of his eye he caught a glimpse of the bright green nail vanish that Skinny Jim had left on the plans. Suddenly he remembered that he was supposed to take them to the station today.
“Sorry Chopper,” he said picking up the papers. “Looks like we’ll be taking a different route for our walk today.
When they arrived at the station they were greeted by what Steve had tried to ovoid the night before, a teenage receptionist. She had her sleeves rolled up untidily, long frizzy blonde hair that obviously hadn’t had much attention for a while. And she was filing her nails with a pocket nailfile.
“Can I help you?” she asked without looking up.
“I’m here to see Police Chief Barnes,” Steve replied.
“Do you have an appointment?”
“No but I’m an old friend,”
“I’m sorry I can’t let you in if you don’t have an appointment,” Steve was getting angry now. Not only was he not being allowed to see Police Chief Barnes but the person he was addressing still had not made eye-contact with him yet.
“Can you tell him that Inspector Steve is looking for him and its urgent,” Steve asked?
“Ok,” the teenager replied and continued to file her nails.
“Well,” Steve said.
“What,” the teenager said blankly.
“Can you tell him that Inspector Steve is here to see him and it’s urgent,”
“Um I’m busy,” this was the last straw for Steve and he was just about to shout when Police Chief Barnes walked out of his office and greeted him with a smile.
“Steve good to see you, why are you here your meant to be on holiday?”
“I have something you might want to see,” Steve said in a stern voice. “Maybe we could talk in your office?”
“Of course,” Police Chief Barnes replied and he led Steve past the front desk (were the teenager was still filing her nails) and into his office shutting the door behind them.

“Are you sure that Jim Thefty and Bob Flab are behind this heist?” Police Chief Barnes asked after reading the plans.
“Positive,” Steve replied. “I know that nail varnish from the day he, you know,” and he lifted his false thumb in the air.
“Steve, if we don’t catch Jim now we will never be able to because he will be across the border and you and I both know we can’t touch him while he is,”
“ I know Peter, what your trying to say is that you want me to come off my holiday to help you catch him.”
“I’m really sorry Steve but you’re the only inspector that hasn’t gone abroad for Christmas.”
“You think I’m sad about this,” Steve chuckled, “I have been waiting for this for my whole life. I’m finally going to put that twig behind bars!”

“Right what are we going to do?” Police Chief Barnes asked.
“Well we know that there is only one warehouse in Chicago that holds valuables and antiques and that is the ‘sparkle’. We can’t catch him before he does the heist because we won’t have any proof it was him,” Steve replied. 
“What about that smudge on the plans can’t we use that?” Police Chief Barnes asked.
“No that could be anyone’s unless we had the bottle it came from we could match his prints to it but all we have is a smudge.”
“So your saying we are going to have to let him get the goods and catch him in a chase?”
“An ambush my friend, an ambush. The plans say he is going to head for the Canadian border we just have to ambush him on the way.”
“According to this the heist is tonight at 8pm. I will ready a S.W.A.T team at once because it is already 19:00 and we need to leave as soon as we can,”

By the time Steve got to the warehouse Fat Bob was already parked up and he and Skinny Jim were loading items into his truck. “They have started loading. I’m going to hang back and follow them to your position over,” Steve radioed in.
“Ok, we are all set over,” replied Police Chief Barnes.

Steve followed Jim and Bob up the high way and then he gave the signal. He honked his horn for three seconds and two chains with spikes on them were tossed in front of Skinny Jim’s truck. With a loud bang the tyres on the truck punctured and it span off the high way and into a ditch. Police cars surrounded the wreckage and Jim and Bob stumbled out. They were handcuffed and put into the back of a van to be taken away to jail.

“Merry Christmas!” was what woke Steve up the next morning and he was met by his mum and dad. He hadn’t got home till late and so his parents had probably let themselves in. They opened their presents at the table. Steve got a new watch and Chopper a new chew toy but nothing could beat the present he had received the night before. His life long enemy was behind bars.


Zoe: Slackers

Sorry, I got a few concerned texts today about Sonny. Everything is good we've just been a bit neglectful telling you.

Sonny's been keeping himself pretty busy as you can see by the magnificent photo. What a monster - he loved building it so huge big thanks to all you wonderfully amazing people. I'll also post a story he wrote whilst having his chemo this week. I know I'm incredibly biased but he really is one hell of a kid.

Monday, 8 November 2010

Zoe: A day in the life

Sonny was back on Safari today for some more chemo. They didn't have an isolation room free for him so they found a place for him in the recovery room on Safari where kids come round following minor operations. (No procedures were taking place today). It was a huge room with just us in it and a lady sitting behind our curtain on a computer busy booking children in for procedures. The lorazepam Sonny had taken to prevent sickness had made him rather sleepy so while he snoozed it off I had to listen to lots of terribly confidential conversations about other patients and their choice of portocath v hickman line and a few student nurse appraisals. I also learnt that the secretary's fella was a bit of a let down and keeps falling asleep early leaving her bored out of her skull and that her daughter needed her to babysit as she needed to get her tattoo redone. And there was me feeling sorry for myself.

Sunday, 7 November 2010

Gavin: Top weekend

Another year, another fireworks night. It seems strange that we're still doing this stuff while he has cancer. It was meant to be 6 months and done but, 15 months later we're still counting out pills and boiling his drinking water every night. But whatever, it was a great weekend which saw us host sleepovers on Friday, friends for dinner on Saturday and a houseful of adults and kids on Sunday for lunch. I've let Zoe watch the X-factor followed by Downton Abbey just to top it all off (and show her what a catch I really am). Huge apologies to all those Newcastle fans out there though... Remember, The Emirates is a tough place to go and there's no shame in being thrashed like that in your first season back.

Saturday, 6 November 2010

Zoe: How much!?

Sometimes during periods of quiet reflection I often wonder just how much all Sonny's treatment is costing the good ship NHS. I got a tiny insight today when I went to the chemist today to collect a repeat prescription for Sonny. Despite having it for a few days our busy GP hadn't managed to fax it over. The pharmacist was really nice about it and said that she'd let me have an emergency supply to tide him over. Only she couldn't as is wasn't a stock item and did I know that each tablet is £200? He takes three of these particular ones every day - you do the maths. To finish the story we tracked some down to The Whittington who pulled out all the stops to help me but hilariously the pharmacist there couldn't let me go until she'd also told me how much they were. I gave her a 'big purple one' by way of a hasty thank you banking on the fact she wouldn't have been 'avin it large' in 1989 and shouldn't see the irony.

Friday, 5 November 2010

Zoe: Quick one

Good news... All the tests this week were negative and his PET showed a good response to the chemo. So he's going to have two more doses of the chemo to keep the monster from the door while he's weaned off the steroids. All being well, he should have the new donor cells (thank you again anonymous stranger) in about three weeks time and we should be one step closer to getting our beautiful boy back.

Wednesday, 3 November 2010

Zoe: Testing times

Despite the CT scan being clear, Sonny's lovely stand in consultant (I really like her) wants to make absolutely sure that everything really is ok before either continuing with the chemo next week or giving him the cells from the donor which were harvested today and should arrive in the country tomorrow. So today he had a simple X ray of his chest to make sure it was safe for him to have a general for his lumber puncture procedure. The matter of fact way in which we approach procedures like this these days is beginning to get to me but luckily Sonny is as super as ever. He went down very relaxed chatting about Arsenal and woke up chatting about how he'd buy us a box when he was playing for them and his birthday plans and didn't stop for about 2 hours. Its going to be quite some event I tells ya. Just an MRI of his head to rule out anything else nasty tomorrow and we should be able to put this week behind us.

He's knee deep in Lego and loving it. Thank you everybody x

Tuesday, 2 November 2010

Sonny: THANK YOU !!!!!!!!!!!!!!!!!!!

I'm writing this post to say thank you to everyone who contributed to getting me that amazing LEGO. I had been looking at it in the catalogue and I thought it would be one of those sets that you just have to look at and long that you had the money to afford it. For everyone to pitch in and get it for me was so nice I can't quite describe it. I know I will have lots of fun building it and will put up a picture of the finished product when it is complete. I feel a little bit spoilt, I mean its my birthday in just over 2 weeks. Aren't I meant to get all of my goodies then. If anyone that helped organize the gift gets invited to my birthday party please do not get anything else. Seriously, you would have given me too much and would of probably given me more than my parents had and I can guarantee they will not be happy if they do not get me the best present. Between you and me though they are gonna have to buy me a flipping football team to top it.

Monday, 1 November 2010

Zoe: Dr Who?

A doctor from GOSH rang tonight who is covering for Sonny's consultant whilst he's away. She wants to see Sonny tomorrow just to check if everything really is ok. What alarmed me was that this was a complete  surprise. I guess the shock was that we are so busy pretending that what happened is normal that we forget that none of this is normal at all.

Sunday, 31 October 2010

The Andersons: Happy Halloween

Saturday, 30 October 2010

Zoe: Ambulance please

I couldn't find Sonny when I got up this morning. I'd heard him get up but when I came down he wasn't in his room or downstairs with the girls (Ruby had a friend to stay overnight). I discovered him collapsed on the floor having fallen off his chair in his bedroom, breathing strangely and I couldn't wake him. I refuse to share what went through my mind but needless to say it was an almighty relief when he started to come round and chat about what had happened in the ambulance on our way to the Whittington. He appears to have had some kind of seizure, fit type thing however, after lots of tests he's been given the all clear. We have know idea what caused it and probably never will. He's being kept in overnight for observation but the plan is to let him home tomorrow for his Halloween party. Personally, I've had enough frights this weekend.

By the way, the photo is of Sonny fooling around with the face mask I insisted he wore in A&E. Told you he was feeling ok.

Friday, 29 October 2010

Sonny:Nothing goes my way

I never get to do anything with my mates anymore because as soon as thy start sniffing we have to cancel our plans. Its just not fair. My birthday is coming up and I have decided who I want to come but after all these cancelations I am bracing myself for the phone call telling me that someone's sniffing or coughing or had to blow his nose and can't come to my party. Life just isn't fair!!!!

Thursday, 28 October 2010

Zoe: Ordinary Day

I'm nursing a wee hangover after another cheeky night out with my fella. The house is full of kids making a right old racket above my head and the chandeliers are mildly swaying. I don't mind.  Gav is hammering away in the garden making a shed (I know, what a man) and I'm wondering how long I can get away with doing nothing...

Tuesday, 26 October 2010

Gavin: Some wouldn't, but Tiger Wood

We headed to the driving range today to see if class really is permanent. Despite not having swung a club in anger for over a year and obviously not being in peak condition, Sonny consistently nailed his driver to 120 yards with ease. It was quite funny watching him get adoring glances from all the Highgate mums having lessons only for their looks to turn to horror when they realise that it takes more than a full set of Callaways and some Titleist balls to hit shots like that. And when I say 'Highgate mums' I mean 'me', obviously.

Monday, 25 October 2010

Gavin: Schoolboy errors

Arsenal beat Man City at the weekend 87-0 and the sheer excitement has meant I've taken a week off to celebrate. Today we went for a short walk to Tesco's, ate hot dogs, played table tennis on his PS3 (the last one blew up) and talked about how Nasri is the future and you don't need to spend £50m to win the league. His bloods are now recovering so he doesn't feel too tired and, despite the battering the steroids are doing to his body is in great spirits. He's currently doing fake entrance exams where he's scoring about 95% despite missing a year of school. We're working hard on the other 5% as we speak. 

Saturday, 23 October 2010

Gavin: Thankyou

We spent the afternoon today organising Match attax into 3 piles of firsts, seconds and thirds then recording the doubles and triples and posting them on a match attax swapsite. Considering he has so many, Sonny now has a full time job managing his account and patiently wrapping cards in cardboard to send off to other kids. You may not realise, but sending him a couple of packets has opened this up for him and for that we're incredibly grateful. Alongside this, we've received original paintings from Italy, cuddly toys from Canada and a rather nice Fortnum and Mason hamper for us. Everyone has been amazingly generous and we really do appreciate it. I don't want him to come across as grabby, but his Christmas list has a Range Rover Sport at the top followed by size 7 Louboutins.

Friday, 22 October 2010

Zoe: Ill at ease

Yesterday evening we finally got the news that Sonny's donor was willing and able to give more cells. This brilliant news was rather dampened by the fact that Sonny is starting to feel rather rubbish. Nothing major, just really tired. His blood results are showing that the chemo is doing its job and everything is really suppressed but it now means we are on red alert again in case of neutropenic infection.

He's got to go into the Whittington today for some more platelets. To give you an idea of what this stuff does he's got a platelet count of 11 whereas you and I will have one of 150-400. So no dancing around here, its business as usual. I'm going see if he can have some GCSF whilst he's there too as this should boost his neutrophils but they may not agree as he's had a bad reaction to them twice now. Can't believe that I'm so blase about the reaction that I'm prepared for him to have another reaction in 'safe' conditions to avoid him having another spell in hospital but that really is the way it is - and I hate it.

Wednesday, 20 October 2010

Gavin: Waiting

It's an uncomfortable time at the moment as we've had no word from the donor (as yet). Sonny is doing great and, despite all the negatives his well being has a huge effect on our bigger picture. In the past, we've watched him lose two stone and have the surgical team visit us each morning. We've been told 'this boy is on very thin ice' by a Locum on a Sunday at midnight and of course, we've taken him to intensive care at 4am and held each other tightly. But, despite the fact that his cancer is back and in more places than before, he's happy, chatty and enjoying himself. Doctor's know the symptoms, not the every day. If he's happy, so are we. It's his illness after all, we'll be lead by him.

Tuesday, 19 October 2010

Zoe: Ticking along

Sonny's continues to be chirpy and is showing no real side effects from his chemotherapy. He's become rather attached to his sprouting head of hair so it will be a real pity if it starts to drop out. He gelled it the other morning which properly made me laugh - lots. With no future treatment planned for a few weeks he's busying himself blogging and searching for Match Attax swaps on line. I'm quite enjoying pottering around like an old lady planting my spring bulbs. Black tulips again this year with snowdrops if you're interested.

Sunday, 17 October 2010

Gavin: Date night

Zo's mum came up tonight so me and zo went out to our local italian restaurant. I'm quite pissed and Zo's still tallking to her mum about zucchini while her eyes glaze over. Probably best I blog tomorrow as the keys on the computer keep rearranging themselves to confuse me. kcinfug hngit.

Friday, 15 October 2010

Zoe: Yes, I'll hold...

Sonny's neutrophils recovered enough for him to complete his chemo yesterday. Huge sighs of relief all round from us but he had to pop back today for some platelets as they were too low. The original plan was for Sonny to have another PET scan on Monday to see if the chemo had had any effect, followed by a planning meeting on Thursday. However, I've just had a call to say that its too soon to tell and its been put back to 1st November. As glorious as it is being at home the downside to it is you have to be told these dramatic changes of direction over the telephone by a rather green registrar fresh out of a meeting with the clever consultants. The registrar will often openly admit we may probably know a bit more than them on the subject when we start picking apart what they say and begin questioning the messenger. And so the telephone tag continues... Its the NHS after all. Our oncology consultant is something of an elusive demigod at the best of times, however he seems to get my angst and even telephoned today to support me through my hysteria on learning that we still don't know if Sonny's donor is up for round 2 or not. Its exactly for reasons like this that the donor and recipient remain anonymous to one another.

Thursday, 14 October 2010

Zoe: State of flux

Sonny's blood counts have dropped through the floor. He's neutropenic and his platelets are very low. This is all to be expected as a result of the chemotherapy. However I didn't expect to get a phone call yesterday to say that his counts were so low that his chemo would have to be delayed. I had a bit of a Michael Douglas, Falling Down moment at this news. Any ways turns out that I shouldn't have been told that and after a few desperate phone calls I was assured that he was a priority case and that everybody was working on a plan.  We're off to GOSH now armed with armfuls of Match Attax to pass the time. Thanks to all your gob smacking generosity...  He properly loves them and they don't hurt nearly as much as stray lego when you tread on one either.

Tuesday, 12 October 2010

Zoe: Pretty in pink

Hee hee, Ruby's wearing a pink dress. She's all dressed up to be Katherine of Aragon in her school assembly which was ace by the way. It was like Noel's Houseparty here today with Nanny and Da sitting for Sonny so I could go to marvel at the assembly; a visit from my cousin Emily all excited about a new job; Ruby's guitar teacher and Sonny had both the hospital school teacher closely followed by his tutor to see if we can get him up to speed for the looming entrance exams (whatever).  I can't believe I've got to send the secondary school applications off without actually seeing any schools but hey I guess that's what the wonderweb is for eh...

Monday, 11 October 2010

Gavin: Sleep over

Sonny went to his mates for a sleepover at the weekend. Yep, you read that right. We figured that keeping him in a bubble is all well and good but is it really helping him mentally? Of course, we needed to check all the other kids were well and gave poor Jane a 30 minute lesson in clamping hickman lines and temperature monitoring but he had a brilliant time.
Rubes was on a sleepover as well so me and Zo went mental in Shoreditch. When I say 'mental' we had an early tea then drove home and drunk squash in case we needed to join an ambulance at The Wittington. Then Ruby rang up in tears so we went and got her. Then we were pretty tired so we went upstairs to read our books in bed. Yeah... woooo... yeah... etc.

Saturday, 9 October 2010

Zoe: De ja vu

This is Paddington Bear perfecting one of his hard stares. Isn't she adorable... she was dressed up for World Book Day even though the last one only seems a few months ago. Meanwhile, Sonny had his chemo on Safari Ward as an outpatient. It felt very weird to be back there - the thought of having to go there initially for 6 months of treatment horrified us at the start but now I long for those heady days of optimism. They run a pretty slick operation up in Safari and we were only there about 4 hours. This chemo isn't nearly as harsh as some others he's had to endure and I'm delighted to report that he's doing really well and seems to finally be one of those kids who sails though it. 

Thursday, 7 October 2010

Gavin: A pretty shameless plug

With a stunning lack of foresight, some of you may remember me and Zo bought a house in Italy a couple of years back. Despite having a couple of other things to take care of, with the help of some great people in Italy (and some deep pockets from our families), she's managed to get it ready for rental.
So, clicky the picture or the link below and feel free to book it up, recommend it to your friends or say things like 'I don't think it's really appropriate to sell their villa on a blog about their son's illness'.

PS it takes a while to load, but we're working on that.

Wednesday, 6 October 2010

Zoe: Light at the end of the tunnel

Sonny is online, playing on his PS3 with his chums. He's wearing a headset and chatting non-stop to his friends. I can't believe how excited, loud and bossy he's being. I'm worrying about the deep scars that enforced isolation have left on him and the maze of possible physcological side effects of all he's been through... and then it hits me. This is Sonny being himself. I haven't heard him being like this for such a long time and I've actually forgotten how he behaves when he's having a really good time. In all the nightmare of diagnosis and treatment our boy continues to shine through.

Monday, 4 October 2010

Gavin: So this is normal

We left the hospital today at around 3pm rather than midday after Sonny had another reaction to the GCSF. As we left, I said 'well that was a pretty good day' as we'd managed to get out before 6ish. It wasn't until I got home I realised what we're now taking as normal.
The reaction to GCSF makes his lungs compress. This makes him drastically (and very scarily) short of breath and raises his blood pressure dramatically. His sats, which normally sit at around 99-100 drop to around 80, his temperature increases and his heart rate climbs to around 160. There's a lot of activity and a senior nurse pushes in a double dose of piriton (presumably because as they're senior they don't need to have it signed off by another nurse) while the doctor checks his lungs for any serious blockages and our assigned nurse takes his blood pressure and whacks him on 10 litres of oxygen. Sonny continues to be sick and feels terrible as his body goes into overdrive trying to reject the infusion. Finally, after around 20 minutes, things begin to settle down. We restart the infusion with 15 minute blood pressure and temperature readings and then wait an hour after the infusion to see if there's any change. He needs to eat something to ensure it's not gut related and be seen by the senior nurse who's bucked the rules to get the Piriton in.
I'm not writing this to make anyone feel sorry for us or him, just to point out that before we used to shit ourselves if he received a bad tackle at football. Looks like our goalposts have changed .

PS A few people are asking where to send Match Attax... as we're home, feel free to send them to 30 Prah Road, N4 2RB. Thanks.

Gavin: Quick one...

Sorry for the lack of blogging over the weekend. Sonny tolerated the chemo well, we argued for him to come home a day early so we could be in to watch The Mighty Arsenal™ beat Chelsea 2-0 despite being away from home. As usual, Sonny had a nasty reaction (just as we were leaving) to a different drug that was meant to help him and ended up on oxygen, but it passed and he seems fine now.
We're back in today to have the same drug so they're frantically working out a different way to give it to him. Hopefully we'll be home in time to catch the end of the Ryder cup to watch Europe clinch victory over the Sceptics.

Friday, 1 October 2010


Sonny here and I have news. Match attax are back and they are better than ever. For those of you who don't know match attax are like the best thing for hospital and I went mad for them last year collecting both the premier league and world cup versions. I have been so hooked on lego at the moment but lets face it that isn't cheap and today one set cost me about £50. Lots of people have been offering to get me lego but its so much money that I feel like its my birthday every time I get one and that is frankly ruining my birthday list and need some sort of lego to keep me going between my birthday and Christmas or i'll be as bored as ever. If you want to get me a present match attax will do just fine. Thanks for reading you can get a bit more info on my other blog the FA. If though you insist on getting lego tell me before you get it and I will send you a list of the ones I want. If you add a price range it makes it a lot more easy for me to pick because I have a habit of milking offers like lego and only give you a list full of £60-£100 sets. And than I get annoyed that you got me something cheap when I asked for the pricey ones. Thank you and any cards will be welcomed.

Thursday, 30 September 2010

Gavin: And the beeps go on...

So we're back in and starting again. We arrived at 9am and immediately went out to buy Zoe a cardi as there's no hot water on the ward. It may be the Best Children’s Hospital In The World but, they could probably do with diverting some of the money spent on rubbish telly's into stuff like heating.
The PET scan has confirmed the cancer is back and a bit worse than they thought so they're upping the doses to get the right results. Not great, but to be honest cancer rarely is, so we'll crack on.
We now wait to see the effects of a chemotherapy that hasn't been used on a child before. Although this isn't particularly reassuring, we’re still confident of the care and attention we receive from some great Consultants.
Sonny called tonight and through his lorazepam haze (the drug he takes to chill him out for the chemo) chatted about how excited he is about the Poulter/Woods pairing in tomorrow's Ryder Cup. I tried to explain just why it's so interesting this year on the back of Wood's indescretions, but every time I said 'porn stars' he started giggling.

Wednesday, 29 September 2010

Gavin: The final supper

Sonny goes back into GOSH tomorrow to start chemo which could last as long as 6 weeks. After this, he will receive more donor cells without any immune suppressing drugs to let them fight off the root of his cancer. If this isn't successful, they will continue every three months, upping the dose of cells to promote GVHD. This is playing with fire. In most other cases, they avoid GVHD but with Sonny they are actively promoting it and then balancing the symptoms against cure. It's as scary as it sounds.
On a cheerier note, Sonny is great. He shouted up chilli wraps for his last tea at home and seems fine about going back in. When he was about five, my dad said there was something special about him, that he'd be Prime Minister or something when he gets older. It's difficult to disagree at the moment. His level of calmness and understanding is way beyond his years and he continues to amaze me with his rational thought about the situation. I'm pretty confident that if we put him up as the new Labour leader now, Ed Milliband would be all like yeah, fair enough, I enjoyed my week.

PS I've taken the decision to stop the (BMT+120) etc. in the title as we're starting again. I haven't checked this with Zoe though so they may be back. I'm so Tony Blair.

Monday, 27 September 2010

Zoe: If you fall off a horse get back on (118+)

Apart from the X Factor double bill, it was a very quiet weekend in the Anderson house.  We'd love to see people but we don't really dare. We are living in fear of Sonny catching anything that could hamper his future treatment (remember the paraflu). He's feeling better though, the massive dose of steroids are doing their job - his temperature has come right down and he's beginning to eat more. We are waiting to get an admission day and treatment plan from GOSH. I think this is being worked on today and we should hear when they want him hopefully tomorrow or the day after. When we'll be ready to go at it again...

Friday, 24 September 2010

Gavin: Starting again (BMT+115)

As predicted, the cancer is back. The lump in his chest has grown significantly and we sat down today with some big brains to let us know what comes next. To be honest, just knowing what comes next is a relief as our fear for the last week has been that this really is it. We were so scared that the conversation would be go home with a big bag of drugs and book a holiday to swim with some dolphins that we're strangely happy with the meeting.
Don't get me wrong, it's not great. Sonny will now undertake a month or so of chemo and radiotherapy to (as our consultant put it) slice the top off the cancer, then the BMT team take over to give him more donor cells which will bolster his bloods to fight it off. Or not. I asked for some time frames and the Director of BMT told us they have kids that are still taking this route three years down the line. Maybe that's why I'm happy. Three years is better than 3 months in my book. Last thursday I thought we were looking at three weeks.
Sonny is home for the weekend as there's no reason to keep him in GOSH. We'll be back in Tuesday or Wednesday to start this all over again. And start this again we will. With new Lego, new PS3 games and a whole new outlook. 

Thursday, 23 September 2010

Gavin: The force is strong in this one (114)

Star Wars day today with Sonny starting to build the Battle of Endor at around 6pm and calling it a day at 10. In my day, me and Steven Bowers would happily sit and make up our own lego spaceships but now it's all instructions this and moving parts that. Sonny loves it though and, despite costing us around £4k a month is well worth it.
In other news, he managed to eat some smoked salmon and crusty bread with brioche for desert. It's worth pointing out that these we're his choices, but is great nonetheless. PET scan booked for tomorrow so hopefully we'll get some answers soon.
I just re-read my post and realised I've typed 'in my day'. Jesus Christ.

Wednesday, 22 September 2010

Zoe: God is a TV repair man (113+)

Despite the labs being full of little petri dishes containing a myriad of samples from Sonny's bodily fluids for the best part of a week his results keep coming back as negative. This means that they can safely rule out an infection causing the temperatures and he can come off the huge cocktail of antibiotics that have been steadily increasing as the week went on. This is nice for Sonny and rather lovely for his poor weary parents who won't have to be up half the night cancelling 'near end syringe' alarms throughout the night.

In other news our dear friend, Colin the TV repair hero man has got Sky Sports 1 back on the TV and all it took was a cup of tea and two sugars. I'm off now to find the plumber so we might be able to have a bath. I kid you not.

Tuesday, 21 September 2010

Gavin: A good day (+112)

I was busy being an international businessman today and missed ward round but Zoe reported back that the news is still promising. Basically, the top man also feels that Sonny's symptoms are GVHD rather than a return of the cancer, despite the symptoms being virtually identical. Sonny had a CT Scan today to rule out a fungal infection and, if we get a good result on that he can restart steroids that will keep his temperatures under control. A PET scan is being organised as well to be completely sure, but no one is taking us into another room just yet and talking in soothing tones. Which is a relief.
Sonny isn't exactly improving rapidly but he isn't getting worse - something we were expecting to happen. Today he managed to eat a bowl of cereal and drink some water which is a big step that keeps the TPN (intravenous food) from the door. If that's started, it takes a while to wean him off and guarantees an extra week or two on your stay. For now we'll await test results as each will alleviate our fears, but it's fair to say we're all feeling more comfortable than we did last Friday.
Sonny's just dozed off as Arsenal took Tottenham into extra time before beating them. You may have noticed Arsene Wenger on his phone during the game which was a call he put into Sonny asking him if he was well enough to stay up for the extra hour, or if he wanted him to finish them off now. "jouer avec eux comme un chat avec une souris ne" replied Sonny, although I'd already explained that Arsene speaks pretty good English.

Monday, 20 September 2010

Zoe: We know bugger all (111+)

After an achingly long morning of nothing stretching into the afternoon we finally got a bit if face time with a consultant who knows Sonny's case very well. She genuinely seemed surprised at our deep angst and was of the opinion that he wasn't suffering from an infection or most importantly disease but it was mild gvhd as a result of reducing the steroids. Gav and I are not so sure but she put up a very good argument so we'll just have to wait and see what the tests reveal later in the week.

Meanwhile in other news Sonny was entertained for the second evening in a row by Iain Lee. Last night we watched him come last in a classic episode of Celebrity Come Dine With Me and tonight he popped in to say hi as part of a regular Radio Lollipop gig he does every week at GOSH. It was just the lift Sonny needed and he properly cheered him up in a geeky kinda super nice guy kinda way. Really top bloke doing an ace thing, very impressed and very grateful as he'd had enough of cheery it's not so bad Mum. If you saw the episode Iain really wanted to score Lembit a 4 and they had a bit of a row after in Jody's garden... I'll put a picture up tomorrow but I can't work out how to do it on my phone grrr.

Sunday, 19 September 2010

Gavin: Box in the Fox (+110)

So, we're back in GOSH in our little room, under the care of the BMT team on Fox ward. Sonny remains the same... chatty, funny but spiking temperatures and is now on fluids as he's not eating or drinking. As Zoe said, his symptoms have a familiar ring to them and, despite 4 hourly antibiotics and antifungals for the last 3 days is showing no signs of improvement. As we've been in this position many times and obviously know these symptoms more than a weekend doctor who can't be expected to read a foot deep worth of notes, I think we're both ready for the news that the cancer has returned. Before this is confirmed (or not... we haven't lost sight of our own inability to know for sure) Sonny will undergo a multitude of tests to eliminate the obvious. I doubt we'll know anything for at least a week and maybe longer but, in the meantime we'll continue to put on our game face.
Oh, and remember those TV's that I predicted were dogshit (click here)? They've had to come down as the walls aren't strong enough to support them. My next prediction is Sonny will be get through this and be ready for the next part of our journey. I'm pretty much always right.

Saturday, 18 September 2010

Zoe: On the move (109+)

Sonny's temperature got worse last night and everything started to feel horribly familiar. He's being transferred back to Fox, the BMT ward in GOSH tomorrow where they are going to run more tests including a CT scan to check for the unmentionable (bad) and an endoscope to check for GVHD (could be good). Very scary time as despite not knowing or understanding the facts you can't stop your mind racing to places you really don't want to go.

Friday, 17 September 2010

Gavin: Waiting game (+108)

Back in the Witt and not much has changed. He's pretty chirpy and chatty but still hitting high temperatures. We're waiting to see which way it goes... back to the old or into the new, which is an infection and out by next week. To be honest it doesn't have the hallmarks of cancer yet so we'll keep positive (as we always have) until we're told otherwise. In the meantime you can all do your bit. He managed to blog today despite rocking temperatures so feel free to ask him a question and he'll reply. Click here and fire away, even if you don't know much about sport he's very patient and sees it as a sort of public service for the uninitiated.

Thursday, 16 September 2010

Zoe: Hot boy (107+)

The hospital bag has been packed and ready by the front door since we got home from GOSH. I suppose it was inevitable but somehow we'd begun to believe that Sonny was invincible and we wouldn't have to use it. Despite being on top form this week, Sonny spiked a temperature today which meant we had to go straight in to the Whittington. He's not feeling too bad but he's a bit hot, off his food and not weeing very much. All being well, he should start to feel better in 48 hours and then they can let him home. The idea of going was worse that the reality of being there. He was greeted by lots of familiar smiley faces and his regular BMT doctor from GOSH has transferred there to continue her training which he's very happy about as she is lovely and very clever. Sonny has to have a room all to himself which was looking decidedly tricky when we got there. Luckily, by 5.30pm they'd managed to swap some patients around which is good for avoiding nasty germs which the place is teaming with and crack-heads trying to visit their kids in hand-cuffs.

Wednesday, 15 September 2010

Zoe: Prize Fighter (106+)

Sonny is desperate to be back to his fit normal self. The physio routine is hard but I do think it is starting to work. I feel like Rocky's gym trainer, Mickey Goldmill pushing him on. Ok, we're not chopping wood, lifting rocks or working out in the snow but he's working little holes into his socks. Just look how far he managed to walk today.

Tuesday, 14 September 2010

Zoe: Didn't we have a lovely time (105+)

Sorry for the slack behaviour - rubbish internet on the coast and a rather busy day yesterday meant I couldn't update you on our special hols...

Ruby seemed to have recovered this morning following 11 performances over 2 days to friendly Brighton folk enjoying a day out at a lovely food and drinks fair celebrating Mexican Independence Day. After weeks of being under house arrest it was quite a shock to the system to be sharing the event's green room with 12 street dancers, two stilt walkers, a full Mariachi band complete with giant guitars, sombreros and skirts the size of small planets. Being away as a family was awesome. Its ages since we've argued over the ipod playlist. I've missed those Mika v JayZ v Arcade Fire bust ups.