Tuesday, 30 March 2010

Gavin: Arsenal sign Messi

Sonny came home yesterday. After all that fuss, a new consultant turned up Monday, took one look at Sonny's chart and said get packing. We're over the moon of course as he gets three days at home before starting chemo on Friday at GOSH. Wednesday is the big night when we're back as guests of TESCO in their box to watch the greatest team in the world beat Barcelona. He was offered the chance to lead out the teams as a mascot but turned it down, fearing he may go too slowly for them. Bless.

Sunday, 28 March 2010

Gavin: Risky business

Yesterday I quizzed the Consultant in charge hard about the reasons for keeping Sonny in. He was slightly uncomfortable and got a bit defensive dealing with someone who had a vague idea of what they're talking about as I reckon he could amputate the wrong leg of another kid and the parents wouldn't notice but, I understood his reasons and we stay in the hospital.
Today he came in and recommended that Sonny had another 24hrs of antibiotics and, based on my slightly confrontational approach the day before, offered me the chance to take him home if I was prepared to 'take the risk'. Jesus... Take. The. Risk.
Obviously, he's one of those child geniuses that took his A Level's at nine which means he's now only 15 and hasn't got kids or he'd understand that 'taking a risk' with someone seriously ill isn't really an option. Still, I got to deliver the line "Risk doesn't come into it... if you say he stays, he stays". Which in my opinion, is right up there with "you had me at hello".

Saturday, 27 March 2010

Gavin: Look at him, he's well ill...

Yeah, yeah I know it's all neutrophiles this and infection that but come on... I reckon I could take him home between antibiotics and no one would notice. in fact, he's feeling so good I reckon he could drive home himself.

Thursday, 25 March 2010

Zoe: Song... no dance

... NO DEAL.

At 2pm we were told to pack our bags and head to GOSH where they would decide Sonny's fate where he would a) go home b) stay at GOSH or c) go back to the Whittington.

He is back at the Whittington. The science behind the decision makes sense (0.0 neutrophils need 5 days of antibiotic cover) but the road trip to decide it is beyond us mere mortals. Grrrr.

Wednesday, 24 March 2010

Gavin: Mixed messages

As Sonny hasn't spiked in 3 days and is on three different antibiotics, it makes sense we take him home. The consultants at GOSH agree, as they follow strict guidelines for infections that he seems to have passed. At The Witt, it's a different story as they feel any stomach issues are very bad news and want to keep him in until something arises.
GOSH have explained that the consultants over here feel they are guarding the crown jewels as most of the time they're bringing down methed up teenagers, so we can't really blame them. But of course, there's only so much daytime TV Sonny can handle before we have to add self harming to his list of issues. Will let you know tomorrow if the Wittington say Deal or no Deal.

Tuesday, 23 March 2010

Gavin: music to my ears

An MRI scan takes about half hour and puts Sonnny into a big tube that then makes horrendous noises while it does it's stuff. Sonny wears headphones to protect his ears and, when he came out he looked really unhappy. He asked for me to get him out of the room quickly and I whisked him off. 'Was it uncomfortable mate?' I asked... 'oh no it was fine' he replied, 'just couldn't bear any more of that classical music in my headphones'.

Zoe: Side effects

Bit of a tough day today. Sonny's HB was low (6.9) and he could hardly lift his head off the pillow until he started to feel the effect of his blood transfusion. He's also starting to suffer too from mucositis another painful side effect of high dose chemotherapy. With his neutrophils being non-existent any infection is super dangerous so once again he's being pumped full of antibiotics to fight anything that might be bubbling away inside him. Although he's not in Great Ormond Street they are still very much in control of him and its interesting to see what extra measures they put in place above and beyond our chums at the Whittington - today this included an additional antibiotic and an MRI scan.

He's now chirpy, eating KFC and playing Scrabble.

Monday, 22 March 2010

Gavin: Guess what?

Yep, you're right, Sonny hit two temperatures within 30 minutes and, as he's neutropenic (0.0 in case you were wondering) It was a quick dash to the delights of the Wittington where he's just started his antiobiotics for the next 3-4 days. He's in a pretty good mood as has become to see the hospital as a bit of a haven, feeling safe in the knowledge that he can be treated quickly. I'm back at home eating chilli for one.
Will let you all know tomorrow how he's getting on. Goodnight.

Saturday, 20 March 2010

Gavin: Stop. Dinertime

Brunch at The Diner today (yeah, I said brunch... anyone got a problem with that?) where we all polished off The Hungry Man Breakfast. The rest of the day has seen me watch the football results come in and worryingly, get into wrestling with Sonny. That's wresting on the telly, rather than me and him grappling on the floor. Zoe is currently with Ruby at her drama lesson. Like she needs any more in her life.

Friday, 19 March 2010

Zoe: A word from the top

Sonny got this email today:

Hi Sonny!

You may like to know, in case you don't already, that I 'presented' your Golden Certificate in Whole School assembly on Monday. Our Thought for the Week was about working hard and always doing our best. I explained to the children how you had been working really hard and had produced a phenomenal amount of work in between treatments. The whole school showed their amazement by bursting into spontaneous applause, clapping well before the moment when I always say...'And let's give a big clap to all our wonderful golden children this morning.' You stole the limelight deservedly!

The whole school is thinking about you and is very impressed with your tenacity as well as your achievement.

Lots of love from your Head Teacher

Thursday, 18 March 2010

Gavin: Poetry corner

The steroids stopped
the temperatures started
but after a full blood count
the hospital we departed.
He's tired but happy to be home.
Call of Duty won't happen on it's own.
He smiled as he got in his own bed.
So will we I can bloody tell you.

(proper poetry doesn't rhyme, alright)

Wednesday, 17 March 2010

Gavin: Float like a butterfly, sting like a canula...

We were met today by our Consultant who had the results from last weeks PET scan. It shows that the tumors are slowing down their metabolism which means the chemo is having an effect. We're not getting too carried away as we did have the same results back in December but frankly we'll take anything we can get at the moment and see no harm in being elated by this news. The outcome means a stem cell transplant is more likely than bone marrow but as I say, it's a bit too early to start making those sort of wishes.
Whilst explaining why this chemo could be working, he used a good analogy that it's like a boxing match. The jabs in round one may not have had much effect, but a combination of different punches (so it doesn't get used to them) have weakened its resolve, meaning that these last hits should provide the killer blows.
It may have come back off the ropes a few times, but it looks like Hodgkins 'The Lump' Lymphoma is finally getting his ass kicked by the Sunshine kid.

Tuesday, 16 March 2010

Zoe: the special one

Quick blog tonight. Sonny had a good day - he spent the day at the hospital school and Chelsea got knocked out of The Champions League.

There's only one team in London
One team in London
One team in LONDON!

Monday, 15 March 2010

Zoe: Blue Monday

Sonny's battle this week is with the steroids. They are making him sad and he hates it. I'm so proud of Sonny in so many ways but today I want to applaud his stubborn determination not to let the sadness overwhelm him. So if you're ever having a bad day here is Sonny's 'cut out and keep' guide to beating the blues:

1. Have a bath - being clean feels nice
2. Go to school (work) - its fun to be with people
3. Play DJ Hero on Xbox - try something new, you might be good at it
4. Invite a friend over - laughter is the best medicine
5. Eat a Belgium bun - treat yourself

Sunday, 14 March 2010

Zoe: Lotta bottle

Day three of chemo so we are now halfway through our stay... Yippee. Sonny is quite chirpy and is thinking of going down to the hospital school tomorrow instead of a teacher coming into his room. This might be possible as his chemo runs at night and it's just 24 hour fluids throughout the day, hence the stash of bottles at the end of his bed. It's the weekend and past experiences have taught me that there won't be anymore of them to be found until the morning. I've always called Sonny 'my clockwork kid' and he's not let me down, peeing on the hour every hour to flush through this toxic treat.

Saturday, 13 March 2010

Gavin: Like, wow man.

The temperature that's been lumin all week (medical gag) broke at midnight as Sonny spiked a 39.3. This meant a flurry of activity as antibiotics were put up, more machines bought in and the familiar sound of beeping alarms began in earnest. He was understandably upset and couldn't believe that coming in for chemo has turned into yet another drama.
However, his mood was lifted at around 2am when his usual dose of Lorazepam was prescribed IV instead of a tablet. As soon a it was squirted in, he went all spacey and talked to me about the 'amazing colours' and how 'funny' my face looked.
He feels much better now which means either the drugs do work or it was yet another Sonny anomaly. In fact, as I'm typing this, he's making daisy chains for his hair and listening to Emerson, Lake and Palmer.

Friday, 12 March 2010

Gavin: The bedside blog returns

We're back in GOSH today packed to the gunnels with PS3's, duvets and something edible to eat (although to be fair, the food here is pretty good). Typically, the results from his PET scan on Tuesday weren't on the system but, after a good poke around by our consultant (on Sonny, not the system) he couldn't spot any new lumps and seemed really happy with how he was. Hoobloodyra.
Chemo has just gone up (7.45pm) so we're in for a long night but the only thing we have to get up for is the Grand Prix so we're not too worried. In fact, I predict a very lazy morning starting with croissants, freshly squeezed orange juice then egg, bacon and the morning papers. Did you get that Zo? I said croissants, freshly squeezed ora... oh, never mind.

Thursday, 11 March 2010

Gavin: Quick update

Sonny back into GOSH tomorrow as his nuetrophils have come up on their own (clever boy). He starts the next course of chemo and we'll be there for a week or so. His last dinner at home? A bowl of coco pops, bless him.
More to come...

Gavin: This is not just any food, this is... err...

Sales Executive: We all know that a healthy balanced diet is essential to any kid, yeah? So in sick kids, it's obviously even more important, right? So we're proposing that using the basic facilities at the hospital, we can still provide decent food and plenty of fresh fruit and vegetables.
NHS Trust Procurement: Can you do it for less than 4p a child?
Sales Executive: No.

And so it goes on. The standard of food at The Shittington is atrocious and not in a 'ooh, no fresh pesto today' way but in a 'sorry, what actually is that?' one. The only thing that I tried was an omelette that looked and tasted like afterbirth. In fact, the last time I had anything so bad I was nine years old choking down spam fritters. To sum it up, the woman in the queue in front of me said 'jesus, the food's better in prison'. And, she wasn't joking.
So what do we do? I reckon we embark on a Jamie Oliver style exposé where we take famous chefs around the country and reform different units. In fact... the more I think about this, it's brilliant... we'll start in the Gastric Department with Hugh Fernley-Whittingstool, head to Geriatrics with the Hairy Bikers then onto STD's with Ruth Rogers. The only way this can fail is if those short sighted producers at Channel 4 turn me down like they did with 'Raymond's Blancety Blanc.

Tuesday, 9 March 2010

Ruby: Builder Bear

Hi, today my play specialist came round.
Today was a very interesting lesson for our task was to make a bear with a hicman line.
After a long hour she was finally ready and was able to withdraw blood and take the meds to make her better.

She will be treated like I treat my brother... Oh no I won't fight with her I will care for her LOL HA HA.

I decided to call her Butterscotch because of her golden shimmering fur. call me a wos but I am now a nurse and my friend Tallula is making nurse passes for us.

now I'm off to take some blood bye.

Monday, 8 March 2010

Zoe: 0.3 degrees

I've found this weekend really tense and feel almost brittle with nerves. Sonny's neutrophils are at 0.1 - if his temperature hits 38 he has to go to hospital immediately. His temp has been hovering around 37.5-37.7 all weekend. Sonny is getting increasingly suspicious of my over casual manner when I look at the thermometer and now whips it out his mouth to take a look at it first. He is due more chemo on Thursday but as his neutrophil counts are so low he's going to need more daily injections to bring them up. I haven't told him yet...

Saturday, 6 March 2010

Gavin: Saturday...

I love Saturdays. After a week at work being away from Sonny, Zoe is quite happy to take Ruby to kick boxing while I play Call of Duty with him and watch Soccer AM. He had a terrible day yesterday, spending most of it in bed with crushing headaches and a very up and down temperature, but this morning he's woken pretty chirpy. We put plenty of calls into the hospital last night to get their opinions which ranged from the cancer, a virus, tiredness, a reaction to the morphine or because there isn't a full moon this week. We'll keep an eye on him today in an attempt to keep him at home until Thursday when he's back in GOSH for a week starting the next part of his chemo.
And, when I say 'play' Call of Duty with him, I mean I watch while he blows up stuff. It's thrilling.

Thursday, 4 March 2010

Gavin: The only way this would have been better is if Tom Cruise was there mixing cocktails...

The date: 3rd March
The venue: Wembley
The seats: David Beckham's box

David Beckham: Hi Sonny, I've heard a lot about you
Sonny: Hi, wow I didn't think we'd actually meet you...
David: Would you like me to sign your England shirt (Note: David provided goody bags for all the kids containing full England and training kits, toys, books, photos, pens and aftershave for the dads etc.)
Sonny: No thanks
David: (laughing) alright mate
Me: (out of earshot of David) why don't you want it signed mate?
Sonny: Because I want to wear it not get it framed
Me: Well... get that one signed and I'll get you another one to wear
Sonny: But that won't be the one David Beckham bought me?
Me: Fair enough mate... good call
Me: (to David) sorry about that, can you sign his programme?
David: yeah, 'course, my kids are just the same when I get them signed stuff... they're like "I can't wear this"
Me: Thanks so much for the box, the people who've looked after us, the food, drink and of course, you turning up, it's been an amazing night
David: you deserve it mate
Me: *swoon*

Wednesday, 3 March 2010

Zoe: Home free

Just a quick blog tonight. After much discussion and debate Sonny was allowed home today. He had a very exciting engagement... more tomorrow x

Tuesday, 2 March 2010

Zoe: Sexting (with bad language)

The second question people ask me is about how Gav and I are coping? Jumping on the back of the sexting media storm I thought yesterdays chats will reassure you that things are ok.

Z: Really good night of nothing to report. No temps again so waiting for today's blood results. He's still asleep (god knows how the noisy f*****s) I'll call you if I haven't been escorted off the premises x
G: Ha ha... chirpy considering! Be nice and they may let us home, call me when you can x

G: You bought a self help book?
Z: Spiritual enlightenment through lifes shit trip x
G: Next stop, the alpha course. X
Z: If it comes to that we are f****d X

Z: Sonny grolly with low bloods x
G: Log in on your fancy phone and blog that... X
Z: I've tried but it will only let me type in the title bar ... My phone is rubbish x
G: Poor... Will do it later hun x
Z: My phone is great I did it xxx
G: He he x

Z: He's eating and laughing at the Simpsons x
G: The magic of blood. I'm ironing and planning your shelves for down here.... Tell Sonny he is darren shan x

G: How are my babies doing? x
Z: Hell's kitchen USA Keeping him entertained x

G: Miss you a lot x
Z: Call soon x

Monday, 1 March 2010

Zoe: Relentless

Sonny hasn't had a temp for 36 hours and we may just be facing a classic case of febrile neutropenia. Sonny is not very happy. He's been bored (a good sign) but today he's finding it all pretty tough. He feels rough and has barely any energy due to low hb levels which a blood tranfusion should help fix by tonight.