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.

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.

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.

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

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)

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.

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!

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

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.

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.