Gavin: Good going

A good day in Ormond Towers saw Sonny eating and drinking plenty, having a bath and forsaking his mid afternoon nap for a go on his new remote control car. His paracetamol is being changed from 4 hourly to a six hourly infusion (good sign) and they're starting to reduce his TPN. It's all a bit strange really. Last week they had me and Zo making the sort of decisions I wouldn't want to repeat here and today he's asking if he can have another barbecue chicken leg. If he keeps this up we'll need to once again flick the blog switch from ERNEST to FUNNY.

Zoe: Happy New Year

Short blog tonight. The broken nights are starting to catch up with me and I can hardly keep my eyes open. Sonny wanted me to stay up with him to watch Match of the Day and after seeing the new year in with Jools Holland I'm on my knees. He's been in good spirits today and he's still chatting away to me. His pulse has been higher than is normal all day but it seemed to settle down after Arsenals 3-0 win this evening. Magic.

Gavin: Errr, live at the O2

Sonny is quietly giggling at Michael Mcintyre while he performs at the O2 in a Great Ormond Street event. It's all a little depressing, watching a charity event whilst you're in the hospital they're raising the money for. He's had a pretty good day today and the scan results have shown nothing new has grown, so we continue to hold our breath waiting for something to happen. I'm now off to get another glass of squash so I can wait up until midnight. I couldn't give a toss about the New Year, but it's when I have to give him some pills.

Zoe: Tonight at the O2

Sonny's oxygen requirement has been getting less and less. This evening for the first time since arriving here he has gone to sleep without needing any at all. Today he had a CT scan of his chest and abdomen and tomorrow maybe somebody can tell us what all this means.

Gavin: The unkown

Sonny continues to dumfound the doctors by remaining stable. His vitals are good and he was awake for longer today than he has been, even staying up to watch the Arsenal highlights with me. However, it's an impossible situation to feel uplifted about, as no one is expecting Sonny to simply get 'better'. We're waiting for something to happen with his lungs one way or the other that will define what happens next.
We've said all along that we'll be lead by Sonny and how he is, as we know him much better than what's lurking in his chest. Tonight he told me I was mad for subbing Gerrard into my fantasy team and then gave me a smug look when Liverpool lost to Wolves. My heart nearly melted.

Zoe: Holding our nerve

Sonny's oxygen requirement has stayed the same which is a good thing and today's x-ray showed no change.  He hasn't eaten anything for over a week now so he was started again on TPN (liquid nutrition) and I'm wondering if this has given him more energy. Today he's been awake for much longer periods and he even managed to build a little bit of Lego and eat a custard cream and a ginger nut biscuit.

One of last nights BMT doctors who has also worked extensively in Infectious Diseases doesn't think he's had/got meningitis. He's more convinced that the seizure and the muddled brain are to do with the DLI. (The Infectious Diseases people would disagree). The methods they are using to treat Sonny are cutting edge and on the extremes of medical possibilities and we are just having to sit tight and go with it, accepting that we may never have all the answers. Before entering into this we were warned that it was going to be bumpy. Its early days but there were less bumps today.

Zoe: 24 hours

It's not been a great 24 hours.
Sonny has grown another lump in his chest and it has partially collapsed his left lung.
He is on oxygen all the time and he's incredibly tired and isn't having a very nice time.
Sonny's temperatures are being controlled and despite the oxygen requirement his stats are stable.
When he's awake he's making sense and there are small moments when our boy is back in the room.
The new lump could be disease. The new lump could be an infection (not likely given the antibiotics). The new lump could be the graft fighting his disease. No one can be certain. The only certainty is that if it gets any bigger or if more lumps grow then he's in serious trouble and at risk of going to intensive care. They think that this is on the cards.
However the mass we talked about last week hasn't got any larger. In fact it could be getting smaller which means the donor cells are working and attacking his disease. But again nobody knows and there is no way to know.

Gavin and I have had some incredibly difficult conversations with the team about their realistic expectations. They are incredibly doubtful that it will work... but there is a glimmer that it might.

These conversations are immense and immensely difficult to comprehend and process let alone make decisions.

For now we have to hold our nerve.

Gavin: Bing Bong Merrily on high

It's never anyone's intention to spend Christmas in hospital, but all things aside it was a pretty good day. Sonny was much more coherent but is still pretty rough and managed to be awake for only around three hours. Both kids were amazing though, with Sonny putting on a brave face for his sister and Ruby acting like turning off the bong of the sats machine while eating packet Turkey breast was absolutely normal.
The ward made a huge effort by buying a remote control car for Sonny plus presents for Ruby, Zoe and I and laying on a big buffet in the play room. So alongside the generosity of friends and family and a really cheerful and positive vibe from the nurses it wasn't such a bad time. Well, you know what I mean.

PS: From Italy to Ireland and everywhere in between, we really can't thank you enough for all the presents sent. It took two trips just to get them all in the room and made it very special for him. You all know who you are.

Gavin: The facts as we know them

Sonny isn't improving but he doesn't seem to be deteriorating either. The main concern, alongside a very high pulse and temperatures is his brain function, which wavers between being lucid to forgetting what happened an hour ago. Sonny has been this ill before, but the change in his coherence, the odd things he's saying and watching him trying to comprehend why he can't put a sentence together is a new level of distress for us all. We are reassured that the EEG he had today showed no signs of damage and Infectious Diseases are busy trying to grow precisely what has caused the meningitis so they can treat it acurately. There is the possibility that this is being caused by his underlying disease which, although could potentially be 'switched off' with more chemotherapy, will also kill all the cells that have been infused to fight the cancer throught the DLI, putting us back to square one.
Our consultant feels that as the lump in his chest isn't growing dramatically and that his EBV levels are slowly coming down that there are signs that the DLI is working and we should therefore continue as we are despite how awful this is as it may be our only chance. Unfortunately, as the only child to ever undergo this treatment that is pushing the boundaries of medical science, they have no frame of reference. We are reassured that he isn't in ICU yet and he has bouts of talking about Arsenal, but we've also been told that it is now 'appropriate to be very concerned'.
The picture below demonstrates the level of attention he's receiving on an hourly basis. Our nurse today decided to see if Sonny and her could read each others minds by attaching the EEG probes to each other's temples (no small task). The clinical specialist, a busy lady who had a screen full of other kids she had to do today played along for the 15 minutes as our nurse thought of a question and Sonny mumbled answers. If any nurses are reading this, take note. This is care.

Gavin: Results

Sonny had a lumbar puncture today which has shown he has contracted Meningitis. As you can imagine this is a huge shock. They have started treatment and, despite feeling obviously terrible he is stable. We now sit and watch to see what happens next.