Saturday, 27 February 2010

Gavin: Doc Wan

So, here we still are at the Shittington despite promises of a transfer today. We should have known better really as it's not the first time we've been here - literally. Despite this, Sonny is pretty chipper so I wheeled him to the window to watch the march, listened to The Mighty Arsenal take a step closer to winning the league, actually enjoyed some egg chasers at Twikenham and have now settled in to watch ant and dec's new haircuts on ITV. Doctor Hilarious has been replaced by a professional so young I'm sure I saw him get his stethoscope and tongue depressor from the kids dressing up box.

Friday, 26 February 2010

Gavin: friday fun

After 4 days of freedom Sonny started having a temperature last night so went straight back to the Shittington. We're here now as another set of doctors ask the same questions and make the same jokes about his teddy he takes everywhere. When this is all over I think I'll write a book for peadiatricians called 'bedside manner: making kids laugh without stating the bleeding obvious'. Will keep you posted later on whether he's transferred to GOSH or has to put up with Doctor Hilarious for a week.

Wednesday, 24 February 2010

Zoe: Homework

Despite spending most of his days under a duvet Sonny has managed two lessons this week with the home tutor. His school is sending work through to the hospital school and a nice lady comes to the house twice a week for a couple of hours. It can't compete with the classroom. Normally, the only time you get to go to school in your pyjamas is for Comic Relief but he looks forward to the lessons and I think it relaxes him to know that he's keeping up with his chums.

Tuesday, 23 February 2010

Zoe: Citizen Anderson

Despite having spent millions on doing it up, the big people in power are trying to close The Whittington Hospital. I'll readily admit its not my favourite place as they haven't spent any of the money on pediatrics but the alternative would make life for this family a whole lot scarier and its more than scary enough already. As soon as Sonny gets a temperature we have to rush to our local hospital. To not actually have a local and to have to battle through to The Royal Free in Hampstead or UCH on Euston Road could be extremely dangerous. If you feel the same then look out for petition forms in local shops or join the SAVE THE WHITTINGTON PROTEST MARCH this Saturday. It leaves from Highbury Fields at midday and finishes at The Whittington. Power to the people.

Sunday, 21 February 2010

Zoe: Sunday

My boys are back! Rubes and I got back from another 4 hour dance marathon to find Sonny and Gav at home with their feet up watching SuperSunday on Sky Sports... perfect.

The photo was Friday's treat. GOSH held a private screening of UP complete with Pixar magic men Pete Doctor (not a real doctor) and Bob Peterson. I'd argue these two were the coolest men on the planet, after Sonny of course.

Saturday, 20 February 2010

Gavin: Saturday

Am typing this on my phone so I'll be quick. After responding pretty much as expected to the latest chemo they are letting Sonny home tomorrow. Will fill you all in then. Sorry we missed fridays entry but its all been a bit hectic.

Thursday, 18 February 2010

Gavin: The Mighty Arsenal™ for sale...

With a handful of games to go and two tickets spare in the red action section of the Emirates each week, I thought I'd offer up the remaining fixtures at the Arsenal to the highest bidder. The plan is to raise a bit of cash for Sonny to buy something he fancies as he's missed the entire season what with being a bit ill and all. We have home games left of Burnley, Man City, West Ham, Wolves and Fulham and obviously a long run into the final of the Champions League where we'll be crowned champions. Normal price for our tickets is £80 for the pair and I'll happily let them go for that but, if you're either feeling a bit flush now the recession is over or a banker about to collect their bonus and want to embellish that figure a bit, let us know and they're yours.

Gavin: Thursday

After a successful stem cell harvest (for the world), Sonny began his new chemo today. If chemo was graded in say, characters from the A-team, then up to now he's had Murdoch and this new stuff is pure Mr T. Before it could begin he needed a hearing and kidney test to give us a baseline of what this new stuff may do to him. I pity the fool that says this new s**t ain't gonna fight this sucker down.

P.S. For the eagle eyed amongst you, that's the knitted character from The Harry Hill show having his hearing tested too. It was a super gift from Will and Freddy Goold and, if you can spot the knitted character in any of our future pictures, you will win a prize.

Wednesday, 17 February 2010

Zoe: Wednesday

Last night we were told that Sonny's stem cell harvest had been a success. They needed 3.2 million stem cells and yesterday harvested 4.1 million. It is unusual (in a good way) to get them in one day and its a great relief to give him one day's respite. The pipe in his leg was removed before he went to sleep so he got a really good nights rest. His wound was still bleeding a little this morning though, so today is being spent lying very still trying to stop the hole left in his leg from opening up. Sonny has found the last few days very distressing. Distraction is the only medicine so WWII is the theme of the day. So far we've watched The Great Escape and he is now flying a Hurricane over southern England playing Il 2 Sturmovik on PS3.

Tuesday, 16 February 2010

Zoe: Tuesday

Sonny's stem cells are being harvested. His blood is being taken out, spun around and put back in through some large stiff tubes which were inserted into his groin yesterday (it looks like a bic biro). Luckily, his hospital bed does all sorts of tricks. Which is good as he can only lie still, meaning we have to tip his bed into an almost upright position so he can pee. The stem cell machine will run for 4-5 hours - its huge, very noisy and Sonny doesn't like it. We'll know at 5pm if Dr Who and his Dalek need to come back again tomorrow.

Monday, 15 February 2010

Gavin: Monday

We're starting a big week today. He has his op this afternoon to fit the port into his leg that they will use to harvest his stem cells over the next couple of days. We have no idea how he will feel during this but have been warned it isn't pretty. His next block of chemo will then be bought forward to happen immediately afterwards so we can get down to the business of killing off the tumors. We'll keep you posted every day of where we all are.

Saturday, 13 February 2010

Gavin: Believe the Skype

In a bid to get Sonny involved with his mates as much as possible, I've set Skype up on the laptop today so he can talk, free of charge, to anyone who sets up an account. It's really easy to do but here's a quick rundown:
1. Go to and download the program.
2. Set yourself up with a user name (it took a while to get one that wasn't in use, but I presume you could use your email address as it doesn't show up in your window). It will send you a test call to make sure you're up and running.
3. Go to 'contacts' and 'search for new user' - type in sonnyvanpersie or use my email address Then add Sonny to your contacts list.
And that's it really. If you have a webcam or built in camera on your laptop then you can see each other when you chat. But if not, it doesn't matter as you can still hear each other. We'll try to keep Skype open as much as possible so feel free to try and 'call' but it may not get connected. Send a text to either Zoe or myself if one of his chums fancies a chat and we'll set up a time for them to talk if you have no luck.
I tested it tonight with Zoe and it worked a treat. Although she kept looking round the back of the computer to se where we were, bless.

Gavin: Long time no post...

Sonny is back in GOSH. The lump in his neck is a new tumor which has grown through chemotherapy. This isn't great news but we continue with treatment and remain positive. Tonight is a Friday and I've been to dinner with our friends and ended up a bit tipsy, hence my short post. Zoe will fill you in I'm sure. Sorry.

Wednesday, 10 February 2010

Gavin: Psycho Babel

We were visited today by a play specialist and a psychologist. They explained they could help Ruby understand what was happening through play or arts and crafts. I've always thought it was better to simply talk to our kids but hey, what do I know.
I probably sound a bit defensive but to be honest, I'm not sure it's for us. We've maintained a positive outlook through everything that's been thrown at us and always tried to put the kids first. To suddenly have that changed into making pictures out of pasta to put across our perspective seems a bit, well... pointless.
If any of them read this I'm sure they'd explain that's precisely why I need to talk to someone. And of course, they were absolutely lovely and properly professional. I don't know, maybe I do need a chat. I'm confused now. Just to be safe, I'll carry on holding myself tightly and humming whilst rocking backwards and forwards. That normally seems to make the sparkly rainbows come back.

p.s. Arsenal beat Liverpool 1-0 tonight which cheered Sonny up. That's the reference in the title. To be honest, if you need to explain them they're not really that funny are they.

Tuesday, 9 February 2010

Zoe: Temperature Tantrums

All thoughts of going home were quickly brushed to one side when Sonny spiked another temperature last night. He was having a blood transfusion at the time and a rise in temperature is to be expected. However, it continued to rise so the transfusion was stopped and we waited... and waited for it to go down. By midnight it was a fantastically normal 36.4 so I dropped off to sleep thankful that something had finally gone his way. Unfortunately at 2.30 it was back up to 38.8 and with neutrophils of 0.0 there was no way round the fact that Sonny needed antibiotics - quickly. We were told to expect this but no matter how prepared you are its very disappointing not to get more time at home. At least he's not feeling rubbish.

Its not all bad though, we did have some good news. Ruby has got chicken pox anti-bodies so she was able to return to school and take over, sorry part in her class assembly. Phew!

Monday, 8 February 2010

Gavin: Windows of opportunity

We're both pretty knackered today. And if I'm tired then Sonny, with blood levels that have hit the floor, is obviously exhausted. The pain team have stopped the morphine infusion and started giving it aurally so we can get him home hopefully tomorrow - our house is less of an infection risk than hospital. He didn't manage his tests at GOSH today as with his kidneys processing heavy amounts of pain killers, the reading would have been wrong. He's currently having a blood transfusion which should perk him up a bit.
With any luck, the daily injections that are meant to promote the new blood growth will kick in soon and the severe joint pain will be worth it. It better be.
The picture above is not from the set of a new horror film. It's the blanket I had to rig up across the window to stop the lights from the ambulances below. The curtain rail has fallen down since we were last here.

Zoe: Difficult night

Things went from bad to worse last night. He has been getting terrible pain in his bones caused by the daily G-CSF injections to promote stem cell growth. The pain became unmanageable last night. Because he is now neutropenic we can't give him paracetamol as it masks high temperatures and the codeine we can give him didn't seem to touch it. At 10pm Sonny was actually asking us to take him up to The Whittington where they could give him morphine. The staff there acted really swiftly and got him comfortable but he can't come home on a pump. In the meantime, he's meant to be back at GOSH for a kidney function test which we were told yesterday he couldn't miss. Another shared care conundrum.

Sunday, 7 February 2010

Gavin: A fairly painful day

After Zoe blogged below, the nurse told us that Sonny's lines were blocked up and then he felt a bit poorly. So, scrap the pub lunch, we're off to the Wittington... Hurrah! When we arrived, they obviously couldn't get any blood from his Hickman, so needed to insert a Cannula into his hand. Inevitably, they messed the first one up leading to painful screams and blood splatters. The second worked which meant a long wait to see what his blood results were.
In a bizarre act of common sense, the Doctor on call told us to go home and watch the football and come back afterwards - with strict instructions to blue light it if there was any change in him during the match.
After being in for 20 minutes, the Doctor called again saying that although his bloods are a bit high, if we were prepared to do his 4 hourly observations (temperature, pulse etc.) and keep a running total of fluids, he can stay at home. I felt a bit hot and faint that someone was actually putting him first rather than bureaucracy, but luckily that passed.
We're still here as we speak, fussing around him like a couple of old women and praying the thermometer doesn't go up anytime sharpish.
Chelsea beat Arsenal 2-0. It may have been easier just to stay in the hospital to be honest.

Zoe: Poxy news

Hmmm, it is so nice to be home. Sonny has had a mate over to play and we've also lost him to online gaming where he still remains unbeaten on Fifa 10.

Life isn't without its dramas though. Ruby has just had to have more blood taken by our Community Nurse to check if she has immunity to chicken pox. There has been an outbreak of chicken pox at school and this poses a serious threat to Sonny. Sonny had chicken pox very mildly and I vaguely remember Ruby getting maybe just one single spot. This isn't enough for us to be sure that she has immunity so she is being kept off school until we get the results. If she doesn't have the anti-bodies then she'll have to be immunised. Poor Ruby is distraught - not about the blood tests or the needles but because it means she's going to miss her school assembly if we don't get news of the results before Tuesday.

Off to indulge in a cosy pub lunch now where Sonny intends to order a large plate of steak and chips before Arsenal play Chelsea this afternoon... keep the faith.

Friday, 5 February 2010

Gavin: Sonny's home...

Yep, he's back. I'd love to blog more but I'm too excited with his requests for salt and vinegar crisps to carry on. Will blog properly tomorrow.

Wednesday, 3 February 2010

Zoe: On your marks... get set...

The new block of Sonny's chemo finished yesterday and we are going home for a while tomorrow. He's really looking forward to it - I didn't realize until today that its nearly been a month since we were all under the same roof together. Sonny's future treatment protocol is still being agreed even as I write. I haven't got dates for everything yet but the next 10 weeks are going to be very busy with stem cell harvesting, more scans, hearing tests, kidney tests, plus 3 more blocks of chemo to endure. The absence of his treatment protocol even existing on their systems really brings home the rareness of Sonny's condition. I've got a strange sense of comfort (or is it control) seeing it typed out now rather than in its original form of the rough, hand drawn one that looked like it had been done on the back of a fag packet we were given at the weekend.

Sonny is having a little snooze right now, but when he wakes up I've got to tell him about G-CSF injections. These are daily injections of a hormone to turn stem cells in his bone marrow into mature blood cells and to create replacement stem cells in his bone marrow. Clever it is but nice it ain't.

Monday, 1 February 2010

Sonny: visitor at last

today started with a bit of a me vs the world clash me being very upset because I could not have visitors so i curled up in bed under the cover and refused to cooperate with anyone about anything.i did on the bright side get a ipod shuffle [the new one]and listened to some of the the music on that for a bit before the stand off.Mum didn't stop hassling the staff to try and get a visitor in to see me.So i got a bit tired and had a kip when i woke up i asked mum if there was any news on visitors and there was.i was allowed someone in so we jumped to it and got andrew to come in at 7:00 pm yes that late i needed to see someone that we played call of duty 4 for 1 hour and that just turned the day around for me.I did have a lesson in science as well that day but i don't think it went completely right and got a bit boring when the computer started to fail on us so it lost its edge. this was sonny talking on my day.