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.