Friday, 31 December 2010

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.

Thursday, 30 December 2010

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.

Wednesday, 29 December 2010

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.

Tuesday, 28 December 2010

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.

Monday, 27 December 2010

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.

Saturday, 25 December 2010

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.

Friday, 24 December 2010

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.

Thursday, 23 December 2010

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.

Wednesday, 22 December 2010

Zoe: Knife Edge

Its been a hellish 24 hours. In fact, too awful to go into much detail.

Sonny's had another seizure.
It was a shock and really scary.

He had a reaction to the anti-seizure medicine.
It was really scary.

He had to have a CT scan.
Waiting for results is scary.*

More tests follow. They are not nice tests. He has to have his head wired up to a machine. He has to have a lumber puncture which hurts and involves a general anaesthetic.
Ouch and more scary waiting for results.

His temperature is really high.
Its vile watching your child be so ill. Its traumatic making him have these tests.

It will be Christmas soon.
All the doctors will be at home pulling crackers and watching EastEnders.

The PlayStation internet connection has stopped working.
The people who can fix it won't be back until January.**

*So far all results are negative and he's showing no signs of neurological damage.
** This is all Sonny cares about no matter how rubbish he's feeling.

Tuesday, 21 December 2010

Harry Hill: Fight

Gav and I just blogged at the same time about the same thing. But which is better. There's only one way to find out...

Zoe: Waiting Room

Sonny has now been back in hospital a week. Its been a strangely uneventful time which in many respects is a relief but also hard to get our heads round too. It feels strange to know that the disease is coursing through him and this time we just have to sit back and let things slowly unfold. They don't want to give chemo as this will stop the donor cells from working so its just a matter of riding the waves of temperature and all that comes with it waiting for the arrival of GVHD. He feels really lousy today so something might be happening... I possibly suspect it might be. He doesn't seem to be getting dramatically worse disease wise so there could be some kind of magical fight happening in there... who knows. No one here thats for sure but lets wait and see what Santa brings.

Gavin: Still waiting

Sonny is doing ok. He's still spiking temperatures and feeling pretty sick but, for the most part is ok. Just ok though, not brilliant or getting better or any of those words that we'd all like. It's ward round today so we may know a little more although I suspect they'll tell us to keep hanging on to see if anything happens.
With just 4 days to go before Christmas, we're not sure what Santa's going to bring. But I suspect it will need to fit through the hospital door.

Sunday, 19 December 2010

Gavin: Must be a new protocol...

"Yeah, I've written you up to take two cats twice a day with food and a dog on Friday only, alright?"

Friday, 17 December 2010

Zoe: Tower, this is Ghost Rider requesting a flyby

The Red Arrows paid a visit to the ward today. Sonny thought they were simply AWESOME and I learnt that they really do say 'tally ho' when they see the enemy.

Thursday, 16 December 2010

Gavin: Little wonder

Considering Sonny has lived this for nearly a year and a half, it stands to reason that he's well versed in the big C. Rather like how jealous we all are of those kids who speak two languages because the mum is French, Sonny is so fluent he can spot a pre-packaged syringe at ten paces. The nurses on Peter Pan last night were just lovely, in fact they were super lovely considering the last thing they wanted was a cancer patient but, rather like working on a Mac and then being given a PC, they know the fundamentals of looking after oncology patients, but have none of the learned knowledge or short cuts. To put this little story slightly into context, I reckon even at a low estimate, Sonny has had over a thousand infusions through his Hickman line and at his peak, had six syringe drivers pumping in 18 per night (a record at the Wittington I'm proud to point out)...

Sonny: What's that?
Lovely nurse: This is called a syringe driver, it slowly pushes in the medicine.
Sonny: Yeah, yeah I know, but what's THAT (points to small syringe).
Lovely nurse: This is piptazobactum, it's an antibiotic that will help with your tempera...
Sonny: YES, I know what it is but what's THAT (again points to the small syringe).
Me: It's just a different size mate, don't panic it's all the same (knowing full well what he was getting at but making sure I didn't tell lovely nurse her job or she may not be quite so responsive at 4am).
Sonny: But the small syringes will oclude?
Lovely nurse: You can't put anything bigger down a Hickman line, I've checked on the system.
Me: Just so you know, you can... (at this point I'm not sure whether to put my foot down and get her to change it or that will lead to a night of bleeping alarms... I decide to let her try).
*Bleep... Occlusion... Bleep... Occlusion*
Sonny: Would you like me to lie on my other side side to try to unblock it? (Rolls eyes subtlety at me).
Lovely nurse: That would be brilliant Sonny.
*Bleep... Occlusion... Bleep... Occlusion*
Lovely nurse: I think the line's twisted (untwists a not twisted line).
Me: (rolls eyes subtlety at Sonny).
*Bleep... Occlusion... Bleep... Occlusion*
Lovely nurse: I think I'll try a bigger syringe.
Me: Yeah, isn't it annoying when that happens eh, doing it by the book and the stupid machines don't like it... bloody things!
(nurse leaves room)
Sonny: I told you.
Me: Yeah alright, but we need to play the long game here. If you're stuck here for a week the last thing we want to do is tell her job and piss her off... trust me on this one.
Sonny: Good call... did you like my 'lie on the other side' line?
Me: Yeah. Good lad.
(Nurse draws up larger syringe and plugs it in)
2am: No bleeping

Wednesday, 15 December 2010

Zoe: No room at the inn

Sonny spent last night in the Whittington and we made our way over to GOSH this morning to see what his consultant had to say about everything. He agreed that Sonny wasn't right but they are adamant that nothing should change for now and that we should stick to the plan and await the GVHD... at GOSH. This caused the bed managers no end of headaches today as they are completely full and officially are not accepting any patients. In the spirit of Christmas a kindly inn keeper (Peter Pan Ward) found us some room in their stable for the night. I don't think they are used to kids as large as Sonny as they only had a manger but they didn't mind him swapping their straw for his cozy duvet. Meanwhile his stoic star shines brightly.

Tuesday, 14 December 2010

Gavin: Tuesday

Sonny's temperature going up and down is a sure sign of something wrong. Normal illnesses will grow a temperature and sustain it until action is taken. Bouncing around from 36.3º to 37.8º may sound marginal but to us it's the equivalent of a large sign saying 'Yep, pack a bag'.
So after having his immunglobulin at the Wittington today and rocketing up to 39.5º the decision was taken to start intravenous antibiotics and keep him in. Zoe has done an amazing job of hustling the right people at GOSH to get a PET scan organised soon that will tell us what we probably already know... his disease has flared up again.
We could be wrong. He's got a cold, it could be GVHD or it could be a reaction to to immunoglobulin. But to be honest,  the straw jar we've been clutching at was empty some time ago.
Here we go again. Wish him luck.

Monday, 13 December 2010

Gavin: Life begins at...

It was Zoe's birthday this weekend. I'm not really meant to mention it but I'll face the consequences. Sonny picked up a cold on Friday so we were on tenterhooks waiting to see if it would go anywhere while Zo put her lippy on. Thankfully, we avoided party hats in the Shittingdon and had a lovely night drinking cocktails and eating lovely food. Thanks to all those who made it special... you know who you are.
Sonny's cold also seems to be getting better. A teetering temperature had us on the orange squash last night just in case, but he's woken up brightly with a 36.4º (good, in case you were wondering) and is off to the pictures again to watch Narnia. Although I'm not allowed to call it the 'pictures' apparently as that's not down enough with the kids. I'm making them call me 'Daddio' as a punishment.

Friday, 10 December 2010

Gavin: If I can dream (1990)

Sonny has some redness appearing on his hands. We're not sure whether we're imagining it, it's because of the cold or the GVHD is starting. In the meantime, we're watching Graham Norton interviewing Barry Manilow. Christmas is just around the corner (2008), but Somewhere in the night (1978) we're both thinking Let's hang on (1981), because we're certainly not saying You're looking hot tonight (1984). Could it be magic? (1975)

Thursday, 9 December 2010

Zoe: La la la (fingers in my ears)

Sonny is going to GOSH once a week for clinic. As well as being given a once over by his consultant this is where we get to bump into familiar faces who we've got to know during this nightmare all our lives have become. This is a double-edged sword because as well as seeing people who are doing well you also get to hear of others who aren't doing so well and sadly even worse. However, our lad is doing ok. For once, he seems to be doing what they expect and the clever people remain convinced that we are going to see GVHD soon.  Time will tell.

Tuesday, 7 December 2010

Gavin: It's alright everyone...

I'm feeling better.

Monday, 6 December 2010

Zoe: Upstairs, Downstairs

Gav is being held prisoner in the bedroom. With relief readers you'll be relieved to hear he's got a nasty bug and I'm not about to reveal any seedy secrets. I think he's going to pull through though. At 2.15pm he managed to send a text demanding toast and now we are all receiving regular updates on his recovery status. I have to admit I've been a bit lacking with the sympathetic, nursey, healing skills I seem to have perfected with Sonny, prefering to knock and leave any offering outside for fear of the whole house going down with it. Gav is as strong as a bear, I dread to think what this would do to Sonny.

Sunday, 5 December 2010

Gavin: Sunday Haiku

He sleeps quietly
after a big sleepover
no rash or temp yet

Friday, 3 December 2010

Gavin: In amongst it all...

We're on a knife edge waiting for something to happen. But despite that, we're having the best time with Sonny and it's really nice. From pizza out to two cinema trips, they both came and picked me up from work today and our lovely receptionist stuck him in the Little Meeting Room so he wasn't exposed to the chorus of hacking creatives on my floor. After doing his best Seigneur de Sucre impression, he wrote a diagram on the flip chart with drawings that said 'Meet client. Win business. Buy them beer'. Not quite the lesson in business I wanted to hand down but hey, I supose it's bought me a house in Italy.

Wednesday, 1 December 2010

Zoe: Mystic Pizza

Sonny was instructed by his consultant at clinic today to go out a grab a slice of the action. He hasn't eaten out in this fair city for 6 months and he didn't need telling twice. After dropping round to Sonny's favourite local haunt to explain our absence and all the hygiene requirements needed to win back our business the manager dried his eyes and welcomed us back with open arms. Bellissimo.