Thursday, 30 September 2010

Gavin: And the beeps go on...

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

Wednesday, 29 September 2010

Gavin: The final supper

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

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

Monday, 27 September 2010

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

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

Friday, 24 September 2010

Gavin: Starting again (BMT+115)

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

Thursday, 23 September 2010

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

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

Wednesday, 22 September 2010

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

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

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

Tuesday, 21 September 2010

Gavin: A good day (+112)

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

Monday, 20 September 2010

Zoe: We know bugger all (111+)

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

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

Sunday, 19 September 2010

Gavin: Box in the Fox (+110)

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

Saturday, 18 September 2010

Zoe: On the move (109+)

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

Friday, 17 September 2010

Gavin: Waiting game (+108)

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

Thursday, 16 September 2010

Zoe: Hot boy (107+)

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

Wednesday, 15 September 2010

Zoe: Prize Fighter (106+)

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

Tuesday, 14 September 2010

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

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

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

Friday, 10 September 2010

Zoe: Road Trip (101+)

Ruby is dancing in Brighton this weekend and we're all going with her. The local hospital has been primed, the bags are packed and we are feeling excited and a teeny bit nervous.

Thursday, 9 September 2010

Zoe: Tears before bedtime (100+)

Sonny's had lots of big fat rolling tears today. Not sure why exactly. Could be he's a bit tired from all the home schooling which kicked off this week - one to one is great in theory but pretty intensive if you're just ten and would really rather be at the back of the class flicking paper bogies at the ceiling.

Wednesday, 8 September 2010

Zoe: Grand Slam (+99)

Yay, the kids are locked up again which means we can be a little bit more adventurous. I always rather fancied myself as one of those ladies who played tennis during the day while the kids were at school.

Tuesday, 7 September 2010

Gavin: He's back! (BMT+98)

Odd turned up after 5 nights, ate 2 bowls of food and pissed off. It's so rewarding being a cat owner.

Monday, 6 September 2010

Gavin: Don't panic, but the cat hasn't come home (BMT+97)

I can't believe this. Just when we seemed to be calming down with the intensity of worry that our situation has demanded over the last year, now the cat (Odd) hasn't come home since Friday. I kind of thought we'd got a couple of free passes on things like this for a while. I mean what next? I tried to have a chat about it with our guardian angel but she'd managed to burn her wings on her crack pipe and was a bit preoccupied.

Saturday, 4 September 2010

Zoe: Can't beat the feeling (+95)

Look at this boy enjoying a stroll down the Regents Canal and enjoying the real thing in a pub garden. The deserted pub garden seemed safe enough until a wedding party arrived and our barmaid went home with a dicky tummy. If that wasn't enough excitement for one day when we arrived at the canal actual canal boats were properly using the locks and everything. A hearty seadog merrily doffed his cap and offered to give us all a ride down to the next lock but the thought of explaining how he'd slipped into the canal to the nurses at GOSH was too much for us to entertain. Oh... the adventures we have.

Friday, 3 September 2010

Zoe: Empty Nest (+94)

Gulp. Sonny has gone to play at a friends' house. I don't know who was more terrified - me or the mum I gave the 30 second 'in the event of an emergency hickman line talk' to. On second thoughts, I think it was her.

Thursday, 2 September 2010

Zoe: When Two Tribes Go To War (+93)

The kids are squabbling... bliss.

We had Clinic at GOSH yesterday. Bar a few tense buttock clenching moments when the consultant prodded and felt for lumps and bumps in Sonny's neck it was pretty non eventful which we like. They have begun reducing the steroids, which is the last immune suppressing drug he's on and one that that always stopped his cancer in its tracks. GVHD is still a cloud in the horizon but for now the sun is shining. Pimms anyone?