Thursday, 31 December 2009

Zoe: Happy New Year

I have never been so keen to kick a year up the bottom and say good bloody riddance. Luckily, I don't know how to use a crystal ball so I'll be welcoming 2010 with hope and a fat dollop of courage. We are spending it at home with great friends and a fondue set. Sonny's blood results are good enough to allow myself a glass or two of something fizzy although I'm still too superstitious to allow it to be Champagne until I get the news I so desperately want.

Happy New Year to all our friends and family, you are all brilliant people. We couldn't have got through this year without your love, shoulders and support. Love ya x

Wednesday, 30 December 2009

Gavin: Duvet day II

The chemo of yesterday once again got the better of Sonny. He woke up feeling sick, exhausted and generally grotty. Zoe has taken Ruby to a show that we'd pre-booked not knowing his exact dates so that's yet another thing he's missed out on. We've spent the day on the sofa watching Transformers, Top Gear and Sonny's new passion, darts.
I have to say my little boy is quite remarkable. He spent 8 hours in hospital yesterday having stuff dripped into him that will only make him feel awful and miss fun things today. Without complaining once. If it were me, I'd have demanded people keep me cool with ostrich feathers whilst dropping grapes into my mouth.

Tuesday, 29 December 2009

Zoe: Better and better

I hardly dare write this but Sonny's run of good news seems to be continuing. Every time we visit GOSH for chemo Sonny is assessed by a doctor. Today, following another heart echo the doc used the precious word 'normal' to describe the results. The fluid on his heart has gone and his heart is pushing the blood in and out at the correct rate. More good news followed (I did say better and better). The range of movement in his feet has improved since last week too. We'd thought he was getting about the house a lot easier the last few days but you don't know if he's just getting adept at coping with the stiffness or that his muscles have just grown stronger so to be told it by clever people that really do know is totally brilliant.

Saturday, 26 December 2009

Gavin: Elementary, my dear Watson.

It was a busy day yesterday. Having bought Sonny Lego Rock Band for the wii, we then had to go out to find the guitar and drum set as we didn't realise you needed them to actually play it. This confusion around the technicalities of modern gaming means I have officially become a parent, having embarrassed conversations with eye-rolling youths in GAME as they explained I could use World Tour kit on Rock Band but not vice versa or something*. After purchase, we went to the cinema with our friends to watch the first showing of Sherlock Holmes. Unfortunately, not understanding the technicalities of boxing day viewing either, this was sold out, which meant we all had to go and see Alvin and the Chipmunks II. The kids thought it was brilliant but I started self harming after 40 minutes.
Anyway, we got home, set everything up and, as you can see, Slash and John Bonham rocked out. Their group is called The White Trousers. Thank you and goodnight London.
* please call GAME customer services for a full explanation or pop into your local store.

Friday, 25 December 2009

Zoe: Happy Christmas

Peace, joy and farts to all...

Thursday, 24 December 2009

Gavin: HbO, HbO, HbO...

It's 5pm on Christmas Eve and we've just had the call about his blood results which show (drum roll)... they're all fine. This means there's no need for him to go in for a transfusion over Christmas and, unless he gets ill, we've four definite days off.
It's great news as, after his reaction to the new chemo at the start of the week, we had visions of santa having to drag his sizable sack to the Wittington which would have been a barrel of laughs.
In other news, out best friends are joining us for Christmas day. She has breast cancer and is currently Neutropenic due to her chemo (click here for an explanation). As her parents have colds, she couldn't go to them. To be honest, we're delighted as we couldn't think of anyone better to share our day with. I may have to give up the wishbone though.
Merry Christmas you lot. We hope yours is as special as ours.

Wednesday, 23 December 2009

Zoe: All wrapped up

Sonny was feeling much brighter today and had enough energy to help wrap up the presents. Click on the photo to see what fun you too can have with sellotape.
Only 2 more sleeps!

Tuesday, 22 December 2009

Zoe: Snow good

Sonny woke up crying this morning because he felt so terrible. It was a bit of shock as he seemed to be coping so well with it yesterday but I suppose it is only to be expected with a full 12 hours sleep with no anti-sickness medication. The tears were very big and very real. His beloved Arsenal were due to be visiting the children's ward at our local Hospital and Great Ormond Street today. We'd had the wink weeks ago and both events were confirmed by 'keep it hush' phone calls yesterday, each competing for the presence of the Superfan. I think the staff are more excited than him about finally being able to introduce him to somebody he genuinely cares about (Ruby hasn't quite forgiven him for snubbing the JLS tickets). Thankfully, his heros had a few problems with frozen gates and wheel spinning in the ice and both tours were postponed until the New Year... ding dong!

Monday, 21 December 2009

Zoe: Christmas cheer

Back at GOSH today and after a nail biting weekend we were finally given the news we had been hoping for... Sonny's PET scan showed a good response to the chemotherapy so hurrah, hurrah, hurrah. For those of you interested in all things technical and to give you an insight into the complex new language we are learning the large anterior mediastinal mass now measures 3.4x4.6x5.7cm compared to 5.4x5.3x7.0cm (big lumps have got smaller). All the other tumors show equally impressive reductions too and there are no new ones which to be truthful was our main fear after last time. He will need radiotherapy but we are resigned to crossing that bridge when we come to it. In the meantime its working, he's coping well with the chemo and he should be home for Christmas. I'll drink to that... one lump or two (sorry).

Sunday, 20 December 2009

Gavin: A brrrrrrrriliant day

My mum's just rung which is usually a good sign that I've forgotten to blog. Fortunately, there's nothing really to report as Sonny's blood counts are back up and he's doing fine. He was taken out yesterday by one of his mates' parents to the theatre which he really, really enjoyed. I didn't much, but Zo convinced me we had to let him go. She was right as usual as not only was it a great performance, he felt independent not having us shepherding his every move. And of course, the parents where brilliant looking after him.
Tomorrow is a big day. We get the results of his PET scan plus he starts his new protocol of chemo so we won't know the side effects this one will bring. I'll make sure I blog tomorrow and let you all know.
Stay warm people, it's cold out there.

Thursday, 17 December 2009

Gavin: you can have this one for free...

Who's the coolest person in the hospital?
The ultrasound guy.

Who fills in for him when he's off?
The hip replacement man.

Sonny: I still hate pet scans

I still hate pet scans. I had to l lie still for 45 minutes then in the scanner i collapsed to tears when I became sweaty and a headache struck. I thought it had finished after I ran through the machine a first time but I was too tall for the scanner so they had to take me out and flip me round to do the scan from the knees down. After that they still weren't done. I had moved my head the first time round so they had to put my head in a holder to keep it still. At last I was done I jumped down and went to the car we dropped dad of at work then went to PIZZA EXPRESS. I had a margerita with ham and olives plus 5 dough balls. Then mum wanted to get some wrapping paper and crackers so we went to butlers and paperchase. On our way out of butlers it started to snow we had to fight our way to paperchase and when we left it had stopped. This was my log thank you.

Wednesday, 16 December 2009

Zoe: D.I.S.C.O

Despite leaving hospital yesterday, a very tired but determined Sonny rose to the occasion of the much anticipated Great Ormond Street Party today. He brought along his mate Reuben for the ride and the two of them had a ball avoiding dancing fairies and playing Xbox with Stormtroopers. It was a brilliant bash but I probably need to get out more as I caught myself toe-tapping to Alisha Dixon - god help me.

Tuesday, 15 December 2009

Zoe: Home in time for Christmas

Yippee... Sonny was allowed home today. All his blood cultures were negative so he has just come home with some antibiotics and instructions to come back in if he spikes a high temperature again or starts to feel unwell. All his blood counts are showing that things are back on the climb so he should hopefully be ok now until after Christmas.
Meanwhile, I found this note in Ruby's school bag today. We can never underestimate the effect all of this is having on her. Despite trying to keep things normal she couldn't help be alarmed by Sonny and I rushing out the door on Saturday night during the much anticipated Xfactor final... Simon, here's your superstar.

Monday, 14 December 2009

Gavin: The bedside blog II

As you can see, despite a mild panic over the weekend, Sonny is happy and playing monopoly on a laptop I can only imagine will be stolen by the end of the week. We still await his results tomorrow, but going by what we know and how he looks, we're confident there won't be any nasty surprises. When we're home, we'll fill you in a bit more as if I carry on blogging via this phone keyboard they'll be treating me for bloodystumpalitis.

Sunday, 13 December 2009

Gavin: The bedside blog

It seems a long time since I've painstakingly tapped one of these entries out on my phone but here we are, once again in the warm but saggy bosom of the Wittingdon hospital. Sonny is doing fine. His temperature and headache have levelled out and they have stuffed him full of antibiotics and tamilflu despite putting him through the jabs a few weeks back. A chest Xray has come back clear for infection so this looks like a classic case of febrile neutropenia where we'll never know just what made him hot and feel grolly. Fingers crossed his bloods won't show anything to the contrary and he'll be home midweek. Meanwhile, we're listening to the big Arsenal Liverpool clash on the radio as the Wittingdon doesn't have sky sports. The cheek.

Gavin: Back in...

Sonny was taken back into the Wittington last night with a temperature. They'll assess him over the next 48 hours and see what his bloods do whilst giving him antibiotics. He seems pretty OK and we're not panicking just yet but we'd rather have him at home in all honesty. I'm off there now, so one of us will fill you in later about how he's getting on.

Thursday, 10 December 2009

Gavin: Santa's little helpers

We're in on our own for Christmas day. And, quite a few days before and after that no doubt. Although family will come up to say hello and spend some time with us we'll have to look after ourselves for most of it. Considering I normally start drinking at around 9am and pray someone buys a DVD for the kids, this year we need some suggestions on how to keep us all amused. You have a budget of £5 (for flour, paper, glue and mr muscle for instance) but aside from that it's over to you. Charades are a given, as is the queens speech so don't bother with them. Hit the comments button below and let us know. Any suggestions where I have to retire to the pub to 'find myself' are welcome.

Wednesday, 9 December 2009

Zoe: Duvet Day

Chemo won the battle of wills today. Sonny woke early feeling really dreadful. He had sickness and a terrible headache, something he never has and has barely moved or said a word all day. Looking on the bright side, since being on his new chemo protocol this is his first really tough day... and as I sit here tapping away I think he's beginning to show signs of perking up. Got to run... I've had food instructions. Told ya.

Tuesday, 8 December 2009

Zoe: He shoots, he...

Sonny was back in school today following his last chemo for two whole weeks yesterday... yippee. I popped into see how he was doing at lunchtime and he sharply told me he was ok and to clear off. I'd been home 10 minutes when the school rang to say he'd fallen over and cut his knee playing FOOTBALL. The cut was tiny but there was blood and dirt which threw me into a neutropanic ringathon checking with the Oncology team that all was ok, which it is, phew. And, Sonny reckons he'd have scored too, if he hadn't lost his balance.

Sunday, 6 December 2009

Gavin: Fun raising

We decided at the start of this blog that we wouldn't use this site for charitable purposes. After all, it's up to you who you donate too (I still have a direct debit to Shelter as there are plenty of homeless people out there). But, I wanted to test out hosting youtube videos which meant I had to choose between this or evil eye baby (google it, it's well funny).
Anyway, this seemed a good choice. It's got The Mighty Arsenal™ in it, Bacary Sagna who Zo fancies a bit, and it's all about GOSH. The only way it could have been more relevant is if the costumes had been made out of cake by the Masterchef judges.

Saturday, 5 December 2009

Sonny: It did matter!


Gavin: Welcome home

Today Sonny went to his first game this season at the Arsenal courtesy of our good friend Jason who's a senior figure at Tesco. He organised for us to go into their box which is the only way Sonny could possibly go with a neutrophil reading of err, nothing. Jason led an advance party to make sure no one had any sniffles and, once we had the all clear Sonny walked ("I really don't want to be wheeled into The Arsenal, Dad") all the way there to take his seat right above the goal.
Everyone in the box was lovely. They made him very comfortable without mothering him and bowed to his greater knowledge of football as rugby was their first love. They didn't make a fuss when Sonny took his pills and I took his temperature (6 times). In fact, the hardest part for Sonny was the food. Sausages, chicken wings and spare ribs are perfect for any kid, but he couldn't eat any of it because of his blood results. I'm not sure the packet of crisps and banana I'd bought quite compensated but, Sonny being Sonny he understood and didn't complain once, happy in the knowledge that he was back in his church.
We won 2-0 but to be honest it didn't really matter because he had a brilliant day. We could keep him at home, wrap him in a blanket and make him wear a mask, but it's not really living is it?
A huge thankyou to Jason, Tesco and all those that were in the box. Every little helps indeed...

Friday, 4 December 2009

Zoe: The boy in the bubble

Just had a call from the hospital to say that Sonny's neutrophil level is 0.1. Soooooooooooo scary. I suppose the only way is up now but I'm considering buying him a chemical spill suit to wear to see Arsenal play tomorrow. A friend has got him a seat in a fancy box. The plan is to get him there early and leave late to avoid the crowds - I'm sure the other guests won't mind completing a questionnaire and Gav taking their temperatures before they sit down.

Thursday, 3 December 2009

La famiglia: baci...

Per i nostri amici italiani, ho pensato che sarebbe bello per voi di leggere qualcosa nella tua lingua. Non ti preoccupare, non ho imparato la lingua (Google è brillante) così ci può essere alcune parole sbagliate. Comunque, sappiamo che stai leggendo così pensato che sarebbe bello dire 'ciao' e farti sapere che Sonny sta facendo davvero bene. Spero, saremo in grado di vedere tutti voi di nuovo la prossima estate (compresi i medici e gli infermieri, come verremo a farvi visita anche). Prendersi cura e l'amore a tutti voi.

Yeah, check me out.

Gavin: NeutroPANIC

Pay attention, here's the science bit: Yesterday, Sonny was officially neutropenic. Neutrophils are found in the blood and fight infection. A normal level is around 2-8 but Sonny dropped below 1 due to the chemo which puts him at a higher risk of catching a serious infection and the ability to fight that infection off. Apart from that huge worry, the normal signs associated with an infection (snot, pus etc) won't be made and the only way to tell will be if he develops a temperature. If he does, it's back in for a couple of weeks while they run blood tests and pump him full of antibiotics just in case.
Finding the balance between knowing this and letting him go to school is a tough one. He could easily pick something up from one of the family and being out and about on the Blackstock Road is like dipping him in a petri dish. So, we're figuring that as long as the other parents do their job and let the school know if their kid has an illness, the benefit of being around his friends outweighs the risk.
In other news, he was back at the Whittington today as his line was blocked up and spent the rest of the day on the sofa, exhausted from his efforts at school. Oh, and Arsenal lost again last night but that's pretty normal these days I suppose. I've never liked Carling anyway.

Wednesday, 2 December 2009

Zoe: Sob

Sonny insisted he went to school again today - this time with his lunchbox. The steroids have well and truly kicked in, so to ensure he wasn't famished he wrote me out a full list of his day's requirements. The maths workings on the picture are where he was practising the long division he learnt yesterday - did I mention he was determined. He absolutely loved being back and appeared totally at ease and relaxed in his surroundings which is a huge testiment to his friends and the energy and atmosphere at his school.

Tuesday, 1 December 2009

Sonny: half a day at school

Hurrah! I spent a day well half a day at school today. It was fab I saw everyone in my class, did ICT, went to assembly and did half a lesson of math [it would have been full but I got a bit tired]. In answer to the Question from Nikki I think shannon would find it funny.

Monday, 30 November 2009

Gavin: "...he broke his leg but he'll be back and Darren Bent will still be cak, EDUARDO SILVA ARSENALS NUMBER 9..."

So, we got beat by Chelsea yesterday which did nothing for the mood here. Sonny promptly went off to beat his mate Will on FIFA 10 to redress the balance. Although upsetting for us all, we have been cheered up this week by a fantastic gift from Arsenal for his birthday (delayed due to International duty). Not only did they all sign a shirt and get ANDERSON printed onto the front, a personal letter was penned by Eduardo explaining the benefits of physio in relation to his own horror injury that nearly ended his career (click here for pictures, not for the faint hearted).

I heard a kid who supported Chelsea got ill and they duly dispatched a book of John Terry's poetry. I can't believe he wrote that for a minute.

PS: as with all the pics on this blog, click on them for a larger version.

Sunday, 29 November 2009

Gavin: Back to school

Things are good in the Anderson household. Sonny is back on the steroids as part of his chemo which means he's eating like a horse again. Balancing this with Ruby is tricky. She's not got the healthiest relationship with food so watching her brother eat crap all day to try and gain fat is really hard for her as we stick another bowl of muesli under her nose.

It seems almost strange to think he now has cancer. If his legs were ok and he was in a bit better physical shape the only giveaway would be his hair. We're praying he stays infection free and touch wood, we're a month in and nothing has arisen yet. In fact, his sickness is at an all time low, he isn't suffering from mouth ulcers (another common side effect) and he's the chirpiest he's been even on the mood swinging steroids.

The big news is that a return to school is looming. Although I think both Zo and I would prefer him to stay in the sterile home environment, he can only benefit from some normality and friends around him. The outreach nurse has a big meeting on Monday with the school nurse and headteacher where they will go through everything that needs to happen to keep him out of danger. Luckily, Zoe doesn't have to return to work so, like a protective bear, is able to loom over him all day until she realises chewing the end of his pencil won't do him too much damage.

And when I say bear, I mean tiny little sparrow.

Saturday, 28 November 2009

Gavin: Don't panic...

We haven't blogged since Wednesday but only because we've been really busy which is a great thing. We'll do a proper one today or tomorrow but for anyone concerned about our lack of blogging, don't. Like McCain oven chips, we're all good.

Wednesday, 25 November 2009

Gavin: Sweet baby Jesus

I met the kids and Zo tonight at the Barbican to watch the premier of 'Nativity' a new British film with Martin freeman and that big bloke who did 'my new best friend' or something like that. Not being Leicester Square, the intimate surroundings meant that the stars were only sitting a few rows from us and whooped, laughed, clapped and commented throughout. Normally, I would have got the manager, but it was ace. It felt like you were in their gang and made it a really great night. At the end, we cadged the lift meant for the stars ("four coming up" said the burly security guard into his wrist) jumped in the car and bought a bag of chips. The film was actually pretty good in a not-as-good-if-Richard-Curtis-was-involved kind of way but we all really enjoyed it. I'd probably advise you take the kids rather than make it a hot date but I'm sure you'll enjoy it too.

And, before you start getting jealous about all the perks we're getting from the Hospital, Zo bought the tickets online for 9 quid each with no involvement from GOSH at all. Which is virtually free, man (see what I did there? Martin Free, man? oh, never mind).

Tuesday, 24 November 2009

Zoe: Echo echo

Sonny had a routine heart Echo this morning to measure how quickly his heart was pumping the blood in and out following his last blast of chemo. This showed that it had improved slightly - only 1% so he was given another drug to protect his heart today from this bad boy chemo. I didn't know that his heart wasn't functioning normally and more annoyingly apparently his notes are in such a mess that the Doc couldn't tell me what is was when he was first admitted. Rather frustratingly his new Consultant is trekking in India so wasn't available to quiz either but despite this I felt reassured that measures were being taken to prevent any avoidable damage to such a precious thing.

Off to train the cat now on the newly installed litter tray... grrrrrrrrrrr.

Monday, 23 November 2009

Zoe: Strictly Chemo

Sonny started another run of chemo today. Despite the intense physio regime his 'drop foot' still hasn't improved enough for him to resume the Vincristine. Alarmingly, this chemotherapy forms rather a large part of his treatment protocol but they are confident of curing the disease and don't want to leave him with a permanent disability and seem to think its ok if he keeps not having it... I suppose they know, gulp.

Who'd have thought being poorly could be so much fun... Sonny could have had his photo taken with Gabby & Kenny Logan today. Normally rather camera shy he surprised me by being quite up for it seeing as it was sport related but sadly for him timing didn't allow it.

Sunday, 22 November 2009

Zoe: HO HO HO!

Sonny and Ruby had an invitation to the Harrods Christmas Party today. We were very excited despite having to leave the house at 8.30 on a Sunday morning and chatted all the way about what delights might be waiting in store for us. We joined the back of a long queue of children and their families and I couldn't believe we were really part of this gang. I made a mental note to avoid group 'kid going through a tough time' activities in future.

The staff were fantastic with the children and like all parties things took a while to warm up and get going. I couldn't help thinking they could have done with a magician or two - my kids have long outgrown face painting and can spot a fake Father Christmas at 50 paces but the glitter of the disco ball beckoned and it wasn't long before Gavin was doing the 'Superman' dance... not a beer in sight I promise.

Fair play Mr Fayed and thank you for the hefty gift bags and lovely teddies.

Saturday, 21 November 2009

Gavin: Pulling socks up

Just to let you know the cat has progressed from dumping in Sonny's bedroom to leaving a message in the hallway. It read 'I've shat on the front door mat'.

We're now the only house you have to wipe your feet on the way out.

Gavin: Keep the faith

I wasn't christened as a child and neither was Zo. Our parents thought that it was down to us to decide which religion we wanted to follow as we got older, which was very forward thinking of them to be honest. However, although we don't believe in anything but Arsenal, we're not atheists or anything, so see that there isn't much wrong in people getting together for positive reasons, singing songs and having a nice time. It's just when Zo did go for a year (to try and get the kids into St. John's school), I had to stay at home and do tequila shots at 10am just to ensure there was some balance. She failed.

Anyway, Sonny is being prayed for all over the place. From Ireland to Italy, we're told he's quite high up the asking favours chain and today, we received a package from Canada where my Aunt lives, full of nice messages and pictures from her church.

It's a bit easy to be cynical in these times so I'd like to say a big thank-you to Rachel-Lynn, Jordan and my Aunt Margaret. At the end of the day, if you strip away how you feel about religion, the bottom line is they're thinking about Sonny thousands of miles away. Which no-on can dispute is a nice thing.

And kids, those 'God's power' stickers are rad.

Friday, 20 November 2009

Zoe: Turned out nice...

What I'm learning about this situation is that something will always come along and nip you on the bum when you are least expecting it. Sonny starts a full week of chemo again next week and I thought he deserved a little treat to pep him up a bit. Our lovely community nurse had agreed to pop around early today to take Sonny's blood for testing so that he could catch a quiet 10.30 film at the cinema. I knew we'd be pushing it for time but Sonny's face was soon as wet as the weather when after an hour the nurse had to admit defeat and admit that the line was blocked. This meant that all thoughts of the cinema were abandoned as we had to make our way up to the local hospital to get it sorted. Sonny was livid... I think this was the last straw after months of being brave and simply sucking it up. We live in fear of something happening to his line as the memory of the painful canulas is still very fresh in all our minds. Thankfully, our fabulous Oncology nurse was waiting for him and calmly injected something into his line to clear the blockage telling us to return in 4 hours to see if it had worked - if not it would be x-rays and back to GOSH.

It all came good in the end though... with perfect timing we popped into Wagamamma for some tasty noodles and caught the fantastic Fantastic Mr Fox before returning to The Whittington. Sonny's face was soon beaming when he saw the red stuff quickly appearing into a syringe and we were sent on our way to enjoy the weekend.

Wednesday, 18 November 2009

Zoe: Purrrrrrrrroblems

Sonny is shattered today. He loved being with with mates again but he's a bit down today thinking of them all together at school. Watching Band of Brothers on the sofa with your mum is not a bad way to spend the day but he said he'd much rather be tearing around the playground and having lessons with his friends. He managed a ten minute maths game with his teacher today but started to feel rubbish so is now having a snooze.

In the meantime one of the cats seems to be deeply disturbed by Sonny's sudden reappearance. Just when the hygiene police are on full alert she has taken to using Sonny's beanbags and bedroom rug as her own personal toilet - r.e.v.o.l.t.i.n.g. I spent £50 on plug-in god-knows-whats on the advice of the vet today in the hope that they will calm her down and stop her being shipped out sharpish. Don't be fooled by this cute photo - she's still hiding from me so I'm unable to pap her looking all plump and grown-up.

Tuesday, 17 November 2009

Zoe: For he's a jolly good fellow...

Scroll down first as I've loaded the pictures up back to front...

Thank you for all your amazing gifts and lovely messages - I'll let the pictures tell the story of a fantastic day...

Monday, 16 November 2009

Zoe: One more sleep

Tomorrow Sonny will be ten. It's no exageration to say that we're delighted he's got there. We'll post lots of photos of the birthday boy tomorrow x

Sunday, 15 November 2009

Ruby: The history of DUCK

Duck the star of the blog is becoming a sad duck so to cheer him up I writing the history of DUCK.
Well it all started in Italy when Sonny was in hostpital the nurses gave it to him when he left.
when we got to great ormand street Duck put on lots of diffrent looks like top-less duck and gangsta duck.
then Duck started drinking and getting hangovers so thats why I wrote this blog.

Gavin: Questions answered...

In response to Agent N's comments below, Ruby will now be voting for Joe (the only obvious winner surely?). Duck however has taken Lucy's departure a little harder and is currently looking for an artist who can manage to reproduce a perfect image of her singing 'Sweet child of mine' on his back.

Gavin: Another weekend...

Sonny had his mate round for a birthday sleepover last night. It went really well but Sonny is absolutely exhausted this morning. He's gone back to bed for a few hours to catch up. A small price to pay for playing Call of Duty until midnight.

While he's asleep, I've got a bit of time on my hands to put together a handy cut-out-and-keep guide for anyone interested in some of the finer details of Sonny's disease. It's worth reminded everyone that I'm not a medical professional and, if you do feel under the weather in any way, it's probably best to seek the advice of your GP rather than this list.

The A-Z of Sonny's Stuff...

A is for Aciclover. The drug he takes to stop him getting the cold sore virus I gave him as a baby. He takes it for the entire course of his treatment at 6am, midday, 6pm and midnight. Nice one dad.

B is for Biopsy. The only certain way of determining which cancer is present. And even then, Sonny needed two to be sure.

C is for cancer. A general term for many different types of disease. All are horrible.

D is for diagnosis "Ho paura che tuo figlio ha Lymphoma".

E is for ECG. A machine that monitors heart rate and bleeps annoyingly when it dips below a preset level. Never really been any use apart from to keep Sonny awake.

F is for food. A constant topic as taste buds change daily. The smell of toast makes him sick, haribos can be tolerated.

G is for Glandular fever. An infection contracted in hospital. Bad enough on it's own to be honest.

H is for Hickman Line. A permanent drip straight into Sonny's heart. When this gets removed, you start planning holidays (see I).

I is for Italy. Where we'll all be heading back as soon as we have the all clear to swim, eat pasta and relax.

J is for Junk food. Sonny has to eat chocolate for potassium, chips to put on fat, crisps to help with his salt content. Ruby can't believe it.

K is for Ketamin. Used as a horse tranquiliser and teenage party drug. Sonny had it constantly for two weeks to control the pain of Tiphilitis while not stopping bowel movements by using a drug such as morphine (see T)

L is for Lymphoma. Cancer of the lymphatic system. The specific type is determined through the cells present in the tumor (see B, M, C)

M is for Mediastinal Mass. The growth in his chest discovered in Italy originally thought to be pneumonia. Originally 900 cubic centimetres (about a cricket ball and a half)

N is for Neuropathy. The shortening of the muscles in his legs caused by the chemotherapy (see P).

O is for Oncologist. The name for someone who specialises in cancer.

P is for Physiotherapy. What Sonny has 3 times a day to enable him to walk properly again.

Q is for Quack. Our local GP who refused to take our call when we were in Italy as 'it would cost too much'.

R is for Ruby. A very brave little girl indeed.

S is for Sonny. Upbeat, positive, funny, scared, hard-working, patient, intelligent and amazing.

T is for Tiphilitis. An infection of the stomach Sonny contracted at the same time as Glandular Fever. One of the nastiest and dangerous things you can get. Just horrible.

U is for Unfair. 1 in 100,000 kids will get hodgkins Lymphoma. That's two full Arsenal stadiums.

V is for Vincristin. The nastiest chemo drug so far that's caused nerve damage in his feet. (see N, P).

W is for White blood cells. What gets reduced through chemo and stops the body fighting infection

X is for X-ray. Feels like about 600 of them to date.

Y is for Yell. What Sonny does whenever he comes round from an anaesthetic. Very funny hearing him call the doctors 'idiots' at the top of his voice.

Z is for Zoe. She's bloody amazing.

Friday, 13 November 2009

Gavin: I'm a Starling...Me Darling

Harry Hill is a comedy genius. I don't mind admitting that for years we thought he was our generations' Pam Ayres, but slowly, we've begun to realise that his humour appeals to both the kids and us in equal measure. Which is much better than when we were kids huddling around the gas fire while my dad read out 'Oh, I wished I'd looked after me teeth'.*

Sonny has a joke book from Harry Hill (yet another lovely gift) that he reads every night. He also now has a monitor (no... it's not a 'baby' monitor obviously) which means we can hear every joke he reads out to Ruby in her bedroom and their giggles as he does. It seems strange that before we'd have run up and barked at them both to 'GO TO SLEEP' yet now it's just brilliant to hear. Tonight's favourites are:

Q: What's brown and sticky?
A: A stick.

My little brother brother was banned from the local swimming pool for weeing in the pool. I said "I thought you'd be used to little boys weeing in the pool". They said "yes, but not from the high diving board".

Q: What's orange and looks like a hedgehog?
A: A hedgehog trying to be a goldfish

Q: What's orange and sounds like a parrot?
A: A carrot.

*As I write this, Zoe is reciting the full poem. Yes, this is our Friday night.

Thursday, 12 November 2009

Gavin: Charity begins at err, france

Many of our friends have been incredibly kind with all the gifts they've sent to Sonny. I won't list them here because you know who you are and trust us, watching him enjoy every single one of them has been a real treat. Alongside this, there have been some other big things happening. One of my clients - T-Mobile - held a cake sale for him at their Head Office and raised over £200 to spend as he likes. Considering not one of them have ever met Sonny it's an amazing thing to do. Another client from our Bristol office - LV - held a night to raise money for GOSH and Andy, our MD down there is running the London Marathon on behalf of a cancer charity as long his knee doesn't fall off beforehand. All go into the box marked 'pretty special stuff'.

I'm sure there's more that I can't think of at the moment but the best one for us is that my sister Sian has just completed a marathon in Nice on behalf of GOSH, raising over £1000. It's hugely impressive that she did that to be honest and is therefore worth a special mention. Thank you Sian, we're very, very touched.

I doubt she'd want me to post pictures of her running 26 miles in 30 degree heat, so scroll down for pictures of her as a teenager sitting in a field looking sullen.

Only joking hun... here's the kids playing wii.

Wednesday, 11 November 2009

Gavin: An apology

Tonight Sonny's skin hurt. We couldn't touch him or carry him as it was too painful. A call to GOSH said they thought it may be where the nerve damage was growing back and the pain was the rawness. But, they don't really know and neither do we. All we do know is Sonny is crying. And it bloody hurts him. We seem so caught up in him being home that we've forgotten things like this will happen along the way and that being relaxed is not an option.

Sorry, I appreciate that goes against the positive nature of this blog but you try and write something fun when you can't carry your son to bed because it hurts too much and he can't use his legs to get up on his own.

Tuesday, 10 November 2009

Zoe: Bananadrama

Sonny's potassium level is now 2.8. This is being pepped up with more pills and as many bananas as he'll allow me to cram down him. Following his chemo, the doctors at Great Ormond Street wanted him to go back to The Whittington last night. But, fortunately for him, Sonny's consultant thought he'd been through enough so his daily dose of pills were added to and as long as his levels don't drop off a cliff again he should be able to avoid having to spend another bleeping night on the ward.

If you ever need to get your kid to take some nasty medicine print this photo out and stick it to the cupboard door. This is what Sonny has to swallow every day. Gulp.

Monday, 9 November 2009

Zoe: Things that go beep in the night

The home phone started ringing as we were putting the kids to bed last night. I assumed it would be the grandparents seeing what kind of weekend we'd had as they seem to be the only people who ever use the land line these days so it was a bit of a shock when a voice said he was the paediatric registrar at the Whittington, our local hospital. He explained that Sonny's blood test results taken earlier that afternoon were showing that his potassium levels were dangerously low and that he needed to come in straight away. We had been warned that we would get to know our local hospital very well but I had only assumed we'd be going there for blood transfusions and when Sonny was feeling unwell. He didn't seem unwell to me so we rang Great Ormond Street for advise who explained that any reading under 3.5 was dangerous to the heart. Since his was 2.2 we rang a taxi straight away and hastily packed a bag. Great Ormond Street also said that the test could also be faulty so it was this tack we took with Sonny placing a bet with him he'd be back in his bed in no time leaving Gav consoling a sobbing Ruby remembering last time Sonny had left in a cab for the Whittington he didn't return home for 2 months...

The Whittington has a very impressive new facade and facade it is as the wards themselves are like being on the set of Life on Mars. However the nurse on charge was pleasant enough and repeat tests were taken quickly while Sonny was made to drink a potion even Alice in Wonderland would have turned her nose up at. Unfortunately, the news wasn't good and at 2am we were the lone bed in HDU with the noise of Sonny's scared sobs and babies crying blocked only by a nylon curtain. The noise of Sonny's heart monitor gave us both a very broken sleep and the whole thing seemed a bit of a nonsense when in the morning I peeled the stickers off his chest and popped him in a dodgy minicab booked by the Whittington so that he could be on time for his chemo appointment back at GOSH at 10am.

Sunday, 8 November 2009

Gavin: Charlie says.

We had no idea we'd be celebrating Firework night with Sonny as we were more concerned about what to tell him if he'd be in hospital for his birthday, so this weekend was a real treat. The school and local authority have done a fantastic job of scaring the wits out of the children when it comes to fireworks. Although this is obviously a good thing and mean they won't grow up strapping them to cats or anything, it meant our friend Andy had to show Ruby his 'Rocket Licence' to prove he was actually allowed to buy them.

Obviously the standard of Public Information is much better than in our day when we were shown old 8mm films of terrifying ghosts warning us not to play around water and the extremely graphic production where 6 friends are slowly picked off in a variety of ways (crashing a tractor, crushed beneath an iron gate, drowning in slurry...) while they mess around on a farm. Warnings well worth heeding when growing up in Grays.

Anyway, despite the cries of 'leave it daddy!' and 'don't go back!', we managed to have a great night. Sonny was up and about using his splints well and eating sausages with the rest of us. He really does improve every day and, within a fortnight, I reckon will be out of all the contraptions. It's so good to see.

Here's me demonstrating how the sparks from the sparklers won't actually hurt you...

Friday, 6 November 2009

Gavin: Vote labour (yes really).

If we lived in America, Sonny's treatment to date would have cost us about $708m. I made that figure up but I'm pretty sure it's close as I had to have my ear syringed once in Florida and that was about $50. This means the one thing we can never moan about again is the percentage of our tax bill that goes on the NHS. I used to work with a guy who had a handicapped brother who used to say the same thing and I never believed him. Now I know exactly what he means.

As an example (bear with me), in the early days when Sonny first had tummy ache (that's how we used to describe it) but was feeling pretty good, he woke up shouting at 5am. I tried to calm him down (well, shut him up to be honest) as I was concerned about the other kids and explained to the nurse that he had never been very good with pain. She called the doctor, the gastro team and a surgeon explaining that 'it doesn't matter if he's exagerating, we need to get to the bottom of it'. Turns out he had some of the mass in his kidney and the chemo was breaking it down. He passed it about an hour later as a series of long worms. The surgeon told me it was basically as intense as passing gall stones. From that point on, I never doubted Sonny again and realised that anything we needed was a call away. And yes, of course I felt a twat.

Anyway, there is a point to all this. As part of his treatment we're now in a programme with an outreach nurse. She comes every day at a time that suits us to change dressings, administer drugs and deliver anything we need. The picture above is the box that infuses the nasty liquid (nope I don't mean Ribena) by our wonderful, lovely nurse who makes that up in our living room. Next week the home teacher comes. The day after home physio starts. You're probably getting the picture now.

Get something like this and the NHS are pretty unbelievable. Get a sore throat and I'd advise you to drink plenty of liquids and stay in bed. The difference is that marked.

Thursday, 5 November 2009

Gavin: Home sweet home

So here we all are, back under the same roof and loving it. The difference in Sonny being home this time is massive - we thought that constant pain and sickness from last time were the norm - but he's chirpy, eating and already getting annoyed by his sister. The nerve damage in his legs is quite scary, but he's already making improvements and, as he continues to build muscle, will hopefully start to return rapidly. Luckily there aren't too many stairs in our bloody three story house for him to cope with.

My first job today was to go to the pharmacist to pick up his prescription which I thought would be a bag full. Turned out I had slightly underestimated what he would need (pic below) and, alongside the wheelchair, commode, bath lifts and splints we're starting to look and act like a proper hospital. Zo has refused to wear the nurses uniform I've got her but I'm very happy to pull on a pair of brown jumbo cords and say things like 'this boy needs 20mg of capri sun and a petis filous infusion'