Friday, 30 April 2010

Gavin: Ultrasounds good to me...

The ultrasound lady came up to the room today with her massive bit of kit and couldn't really find anything worth looking at in Sonny's tummy. At one point I shit myself, but it turned out it was his kidney. This means that a biopsy is unlikely on Tuesday and we'll now go straight into a week long protocol of chemo to soften up the cancer before BMT. Or not. Who knows. It could all change again tomorrow. I reckon we've got a better chance of beating this thing at the moment by drawing ancient runes on his body and sacrificing a chicken at the end of his bed.

Thursday, 29 April 2010

Zoe: Heated debate

Sonny's ears must have been burning today. A roomful of specialists spent the afternoon discussing what to do with him. After much debate apparently, the room was still split down the middle between those that thought the enlarged lymph nodes on the PET scan could be EBV related and those that though it was very unlikely to be anything other than Hodgkins. Sonny will have one of the lymph nodes removed early next week so that it can be examined and then we'll all know won't we.

Wednesday, 28 April 2010

Gavin: Twists and turns

Our consultant came to see us late today to explain that on top of paraflu, Sonny has tested positive for EBV (click here for the last time). This is another virus linked heavily with Hodgkins Lymphoma. He explained that the EVB could have something to do with the relapse or indeed be contributing towards his enlarged lymph nodes on the PET scan. We're not sure whether to be bouyed by this news or that it will simply be another problem that has to be overcome before we start treatment. Whatever, our Consultant has put everything on hold until next week when Europe's finest meet once again to discuss the best way forward.
In the meantime we're making sure we make Sonny as comfortable as possible. We musn't forget that amongst all the major talk of high dose chemotherapy and bone marrow transplants, having flu, a lung infection and now EVB is pretty bloody miserable for anyone.

Tuesday, 27 April 2010

Zoe: Bit of a blow

Yesterday was a day of shocks. Despite spending the weekend trying to prepare ourselves and knowing that bone marrow was always going to be on the table it still felt like a hammer blow. After receiving the disappointing news about how useless the chemo has been we were then told that Sonny had flu - Para flu to be exact (never heard of it, nor had we). Anyway, he needs to get rid of this before we can start treatment and it helps to explain the high temperatures he's been getting. As we all know, there is no magic medicine for flu. The great thing about being here however, is that there are specialists in absolutely every area of medicine and when you need them they are there. This afternoon a lovely lady arrived today to help clear the infection from Sonny's lung - he's blowing down a tube into some water to make him cough.

Monday, 26 April 2010

Gavin: The news

We met with our consultant today who explained the cancer had returned. This means Sonny will now undertake a bone marrow transplant as soon as possible. The cancer is spreading to other parts of his body and this, coupled with the fact that he is now the only child in Europe to have relapsed under relapse treatment means he has a huge mountain to climb. Although we felt we were prepared for this news, it's been a huge shock as Sonny was doing so well. We will prepare ourselves as best we can and tackle this as we always have with the unwavering belief that Sonny will make a full recovery.

Sunday, 25 April 2010

Gavin: A heavy wait

It's been quite an emotional week. Sonny remains the same as when he was admitted last week and, despite the hospital's best efforts, still has huge temperatures and isn't eating anything. We're trying not to over analyse his symptoms or second guess what will be said tomorrow with our consultant but all the possible scenarios from good to bad are going around in our heads. We do know that's a bit pointless as however many different options we come up with, it's usually one we hadn't thought of. it's impossible not to try to prepare yourself though.
Sonny has just watched Chelsea beat Stoke 7-0... Did none of these players get my memo?

Saturday, 24 April 2010

Zoe: Transfer window

If you saw an ambulance speeding down Upper Street around 12.30 today chances are that Sonny was in it. He is back in the comfort of Elephant Ward in room 13. Gulp.

Friday, 23 April 2010

Gavin: Sleepless nights

Sonny has now broken the Wittington's record for the number of infusions in a 24 hour period. 18 different things were pumped into him last night ranging from 4 different antibiotics, potassium and the pills we normally give him as his body is refusing to digest anything. Considering these take from 1 to 2 hours plus a flush at the end to go in, I'm surprised there's enough hours in the day to finish them all. He's not getting any better so we're off to GOSH tomorrow to see how they'll make him more comfortable and then work out the longer plan on Monday as Zo said below. It's been a long haul, but these last few nights, for many different reasons, have been the longest yet.

Zoe: Waiting Game

Nail biting few days ahead. Sonny's scans are being mulled over today and then they are meeting with us on Monday to say what path we are going to be taking - Stem Cell or Bone Marrow. If this wasn't worrying enough in itself Sonny is still not very well - it could be viral or could be the old EBV raising its ugly head again or it could be disease. We just don't know.

Wednesday, 21 April 2010

Gavin: A quick update

Sonny isn't improving despite antibiotics which means a transfer to GOSH is imminent. PET scan tomorrow will reveal if this is an unknown infection (his blood results show there isn't one, but he hasn't had a positive result for infection in all his admissions) or a relapse of the cancer. All will be revealed to us on Monday morning where we will take the news and continue to remain positive whatever we are told.

Tuesday, 20 April 2010

Zoe: Grumpy old woman

The temperature in Sonny's room was 27 degrees yesterday. Apparently, it takes a patient to say something to get the heating turned off despite the beautiful yellow thing in the bright blue sky and all the windows being flung open. Sorry, do I sound fed up? I'm not really, its just the longer you spend in places like this the more you can see how unfairly all the money is distributed grrr.

Now the room is a more bearable 21 degrees Sonny's starting to feel a little better. He's having what I can only rather quaintly describe as 'little episodes'. Its just up to the people with the petri dishes to see if they can grow something...

Meanwhile if Sonny and I could go on holiday I think we'd be happy in Eastbourne. I'm knitting and the room he is in only has council tv so we've been actually looking forward to Countdown every afternoon. Today Sonny scored an impressive 41 having got the answer in the numbers round - clever clogs.

Sunday, 18 April 2010

Gavin: Same old, same old

Sonny is really chirpy between a couple of decent temperatures. It's obvious that he has some sort of infection but we're confident that, as usual, it's neither serious or a return of the cancer. Why we think this I don't know, but after 8 months I suppose we understand the subtle differences in how he reacts to these incidents. When we started all this, we were told we would be seeing a lot of our local. We smugly said 'I think you'll find our son isn't one of these sickly children'. It goes to show that without an immune system, anything can find it's way into him and, despite the terrible food, TV and camp beds, it really has become our second home. Sonny had screaming back pain this afternoon that reduced him to tears which coincided with finding out the Arsenal result. I'm not saying he made it up, but I think it was a release of frustration calcified by throwing away a two goal lead. Or maybe he's just fed up with the whole thing. I don't think anyone would blame him.

Saturday, 17 April 2010

Gavin: spoke too soon...

We're back in the Wittington after Sonny's temperature wouldn't settle all day and eventually spiked at around 7. Antibiotics have started so it will be a few days before they find nothing and we can go home. I should have known we'd be admitted as Arsenal are on the telly tomorrow and there's no SKY here.

Gavin: Fat Sam's grand slam

Sonny had his transfusion yesterday which although hasn't completely sorted his temperature has given him some energy ready for a weekend of sport. He was offered the chance to go to see Bugsy Malone through the lovely GOSH Charity but doesn't quite feel up to it so Ruby has gone instead with her friends Tallulah and Rosa. It's a shame Rosa isn't called Bea Boxer as they could all have a song to sing along to.

Thursday, 15 April 2010

Gavin: Bloody hell

We talk about Sonny's bloods a lot and the effects they have on him when they drop. So, to give you an idea of what that really means, here's another handy cut out and keep guide for you all:

HB (Haemoglobin)- takes oxygen around the body. Normal level is 11-13, under 7 and Sonny will need a transfusion
WBC (White Cells) - fight infection. Normal level is 5-10
Nuetrophils - fight bacterial infections. Normal level is 1.5-6, below 0.75 is Neutropenia (scary time)
Platelets - clots blood. Normal level is 150-400, less than 10 needs a platelet transfusion.
To give you an idea of how blood is affected by chemotherapy as it does it's job, here's his last few results:

Suffice to say, he feels rubbish. His temperature is teetering at 37.9º (two temps over 38º in 4 hours and we're off to the Witt). Bloods have been ordered for tomorrow and he's going in to have a transfusion there anyway as the pattern shows he's heading downwards. Hopefully only as a day patient as we're all really enjoying having him here for such a long time.
Fingers crossed, eh.

Tuesday, 13 April 2010

Zoe: Arty Farty Party

Delightful day today. We visited the National Portrait Gallery - Ruby loves art and Sonny loves war so managed to tie the two together with visiting Steve McQueen's moving exhibition. Sonny was also able to catch up on a bit of school work he'd missed out on too with a visit to their impressive Tudor exhibition - its not the same as mucking about with your mates as he had to make do with the audio tour but his mates were able to pop round to muck about when we got home. Lovely.

Sunday, 11 April 2010

Gavin: Cleared for take off

Another great day at Anderson towers saw us go to IKEA twice (me once, Zo to get what I'd missed), Wickes twice (me once, Zo to get what I'd underestimated), Ruby's dance, Tesco's and finally the Tip to take away all the stuff we cleared out of the garden (not much then, you've seen the size of it). Amongst all this, Sonny managed to make his first Airfix model and I think he's done a bloody good job to be honest. His blood results came in this afternoon and although he's 'hovering' on the edge of a transfusion, he feels great and is well chirpy. Things may 'crash' soon and we'll 'fly' to hospital but at the moment it's 'chucks away'. Haha, that's brilliant. I really am good at this aren't I?

Saturday, 10 April 2010

Gavin: An apology...

It's been ages since we've blogged... sorry about that. Basically, Sonny's been great, we had a fantastic belated Easter and now he's been so good we've concentrated on that rather than this. today we lollopped around in our pyjamas and then went to Majestic to buy some wine. Yeah, we're really good parents.

Tuesday, 6 April 2010

Gavin: TV Dramas

Before I start this post, Sonny is great. He seems to be coping really well this time around on the chemo and, although the old favourites of tiredness and being off his food are prevalent, he's really good. I say that in advance because we had a really odd night of TV watching 'Great Ormond Street' on iplayer and I didn't want my own thoughts to get in the way of what's really important here; You guys reading about how he's doing.
So, I say odd because I couldn't quite work out how I felt about the whole thing. On one hand it was desperately sad and depressing. On the other, we realised the extent to which Sonny has been discussed about in the MDT meetings and everything they're doing (consulting with Europe for instance) to resolve his situation. It was equally strange from a familiarity point of view. Hearing the bleeps of machines made us twitch and we knew everything from the corridors they were taking patients down to who was lying in one of the new green beds.
Perhaps the biggest issue for us tonight was the consent forms. We've signed 16 for Sonny now, ranging from biopsies and bone marrow aspirates to simply giving chemo. Each comes with a list of side effects such as brain damage and kidney failure and is delivered in a separate room by your team who explain it all in that head tilted, grave low voice fashion. We take it in turns to sign them in a sort of consent form roulette... if it's not your turn to sign then nothing will happen obviously.
More harrowing by far was watching Arsenal getting trounced by Barcelona. I appreciate how flippant that sounds, but I've obviously lost some sort of compassionate edge and am therefore comfortable saying stuff like that. Or maybe I'm just more cross that we lost than I thought. Who knows...

Zoe: Military Fashion

As you can see, Ruby is feeling much, much better. To prove it she emailed me this photo as she wanted to show off the smart new jacket she'd talked Nanny into buying for her on a shopping trip today. I'm sure the jacket was inspired by Cheryl Cole and not her brother's love of war. Sonny is really missing Ruby being home but took full advantage of her absence this morning indulging in a 2 hour episode of The Pacific followed by a trip to the National Army Museum. Since becoming ill he has got really into WWII documentaries and watches them non-stop. So no surprise that he loved the museum - we were there for hours. The photo shows him busily making shooty things out of lego.

Monday, 5 April 2010

Gavin: Easter Thursday

Poor old Rubes. She was sick again as I waited to bring Sonny home which meant she couldn't stay in the house. As we arrived home, the car was packed so it was one in one out as I shot her down to my parents in Essex who will look after her beautifully. She's so upset as we'd already put Easter back a day to celebrate with Sonny so we're now holding off until she's allowed back to do our presents and eggs. We're pretty sure Jesus won't mind given the circumstances.

Sunday, 4 April 2010

Zoe: I'm a kid... get me out of here!

It's 7.30pm and Sonny can go home. Only he can't because the pills he's been waiting for since Friday are still not back from pharmacy despite asking about them 3 times a day, every day. Anyone who is ever waiting to be discharged will sympathize as this is always the thing that takes the longest and the Bank Holiday hasn't helped things at all as tumbleweed seems to be a tum'ling down there. Gav is kicking off...

Meanwhile another drama is unfolding... Ruby has thrown up. Not a chocolate has passed her lips as we were saving Easter for tomorrow when we can all be home. She's fast asleep now in the spare room, the grandparents are on red alert and I've got the Dettol out.

Saturday, 3 April 2010

Zoe: One more sleep

We've been going at this since the beginning of August and tomorrow might be Easter Sunday to most of you but to us its the day that Sonny finishes his first chemo protocol. To recap, the first was for the wrong type of cancer. The second was for the right type of cancer but wasn't working so to get to the end of this new one is a big event. So raise your glasses to the next one - bring it on. To Easter and new beginnings. Cheers.

Friday, 2 April 2010

Gavin: A Good Friday

Today, for the first time in ages, Sonny went into GOSH to start chemo under his own steam. Normally, he's being crammed full of antibiotics or stabbed with injections to get his counts up so it was a real treat to have a nice breakfast and pootle over for 11ish. On arrival, there was no bed in his room so the kids put on an impromptu performance of System of a Down medleys.
As it was so calm and going like clockwork, I decided to take Ruby up West for a bit of retail therapy but, with wiry girls battling for the last pairs of £4 ballet pumps, Topshop was like a UN post for flood victims. We did manage to get out, but only after I'd thrown handfuls of flourescent green sunglasses and stripy leg-warmers in front of us to create a safe passage.

Thursday, 1 April 2010

Gavin: A different league altogether

The atmosphere was amazing, the hosts brilliant and the food lovely. And, despite being more sloppy than Messi in the first half, The Mighty Arsenal™ bought on the proven match winner Walcott and left us all with the sort of heart warming feelings normally associated with cup finals. Sonny had a truly fantastic night and is still talking about it this morning. You'll have to wait until next Tuesday to get another weak pun based on a Barcelona players name as for now, I've reached my Pique.