Saturday, 31 July 2010

Zoe: Bitter Pill (+59)

Just a few infusions overnight and some fluid means that Sonny's able to come home for longer and longer every day. Its brilliant for all of us and he's beginning to eat more too which is great as he's starting to get all skinny again. I've just added up the number of pills Sonny needs to take every day. 30 bloomin 4. Only its more than than really as some of them are so big they need to be quartered which means 8 instead of 2 and some of them don't come in a small enough dose so we have to 3/4 them which means taking 1 1/2 and then the 1/4 piece so its loads. We try and stagger them out as much as we're allowed but to see him stoically getting them all down is pretty tough on us and him. On the other side of the spectrum Ruby had to take some Ibuprofen the other day to ease her headbanging neck and she made a right old fuss. Its difficult not to be impatient but its also refreshing that she's still just like any other kid taking medicine and she refuses to be brave just because her brother is. Most kids in Sonny's situation would have a tube down their nose for this amount of meds but Sonny didn't want that and you have to respect him for that. I applaud you son.

Friday, 30 July 2010

Gavin: Staying put (+58)

Le Grande Fromage pour BMT came around today and told us that due to a high degree of Cyclosporin (immune suppressing drug) in Sonny's blood, they need to keep an eye on him in hospital for another couple of weeks. Although we hadn't been given any firm dates for coming home, I think we were all secretly imagining it would be days rather than fortnights. Still, at least his hairs starting to grow back which is a bonus. I would have taken a picture but I forgot and now he's asleep. I think it's a bit mean to wake him up just for your entertainment.

Thursday, 29 July 2010

Zoe: Kitted Out (+57)

Sonny was keener than ever to get home today as he was expecting a parcel and didn't want to miss the post. As you can see from the photo he is proudly sporting his brand new Arsenal football top that was delivered today. To mark the occasion we had a little stroll round the stadium to whet his appetite for the new season. I think it suits him.

Wednesday, 28 July 2010

Gavin: A pretty major event (+56)

So, I went out for dinner tonight with my wife. Yeah, read it again... I. Went. Out. For. Dinner. Tonight. With. My. Wife. I appreciate for most of you this can be a fairly standard event but, after a year of not doing this, it was absolutely amazing. To give you a clue, imagine the thing you like doing most in the whole world and then deciding not to do that thing for 365 days. Then imagine how unbelievable it would feel once you were allowed to do it again? Yeah I know, I'm in tears a bit too and I was actually there.

Tuesday, 27 July 2010

Zoe: (+55)

Sonny's started to feel a little bit bored at home. Don't get me wrong - he's not complaining but I can tell he's getting a bit fidgety. We are doing things slightly unconventionally by even being at home so we are in the strange no-mans land of hospital rules and home rules. The only trouble is we haven't had our 'home chat' yet so rather than making it up we are trying to adopt the hospital rules at home. Confused... me too. For instance in hospital all hot food is thrown away after 30 minutes. So if I make a pot of something do I have to throw it away or can I put it in the fridge or can I freeze it and reheat it later? Which leads me back to Sonny being bored. He wanted a new set of felt tips today and shouted out a trip to the shop round the corner. However, despite being able to walk through the packed foyer at GOSH I know that trips to shops are a no no. Today he wrote a little list of things he thought he may be able to do soon. Here they are in no particular order:
1. Trip to Cyber Candy
2. Bowling and visit arcade
3. Buy new football boots
4. Paintballing
5. See Toy Story 3D
6. Quasar
7. Watch a cricket match (see what you've done Stewart)
8. Go to Nanny and Da's
9. Pick your own (fruit not nose)
10. RAF Museum
11. Eat BBQ chicken wings at Yildaz

Its going to be a longgggggggg summer...

Monday, 26 July 2010

Gavin: Elephants never forget (+54)

It's been so nice being back on Elephant. Most of the nurses have popped in to say hello and have a chat and we bumped into a nurse who did an agency shift on Fox once and got big hugs off her. I'm not sure I quite like this level of familiarity, not because I don't appreciate it, but because it shows just how long we've had to get to know everyone. Anyway, Sonny went home today and cooked Banana muffins (sans egg) which he bought back in to give to the nurses. They were really touched by his generosity and are now responding to every press of the buzzer within about 10 seconds. Nice work fella.

Sunday, 25 July 2010

Zoe: Easy like Sunday mornings (+53)

Sonny and Gavin were home today by 10.50am, a new record and caught Ruby and I still lounging about in our pjs glued to Peter Andre The Next Chapter. Sonny didn't need any oxygen over night for the second night in a row and if it wasn't for needing one quick infusion and some top up fluid he could have been at home really. Today was really nice. We got to be together like a proper family. After the Grand Prix we bravely ventured out into the big wide world. We have to be careful about where we go. We visited the local nature reserve and Clissold Park. Sonny's enforced isolation really hit home as for the first time ever he actually showed an interest in butterflies... He still can't run about and play like other kids in the park but he can play a mean game of Pass the Pigs. If he carries on like this Gav and I could soon be making bacon...

Saturday, 24 July 2010

Gavin: Back in err, Elephant (+52)

Yeah, so we like totally nailed today. At 8am the nurse informed Zoe that Sonny had made enough progress to move back to Elephant Ward so, could you pack up and go please as we need the bed. For those that aren't familiar with our journey, we've spent plenty of time in Elephant and know the staff very well. Coming back felt a bit like coming home and the relief was palpable. It's another step closer to getting him home properly so we're obviously delighted he's doing well enough to have these decisions made for him. In other news, Ruby went to her first Heavy Metal concert 'High Voltage' with her Godfather. She had an absolutely brilliant time, enjoying everything from the 'Wall of Death' (motorbikes going round in a circle, not a band) to entering the air guitar competition where she made it through to the final. Yep, you read that right, she missed out on a trip to Finland for the European leg by just one place. Can you imagine?
All in all a pretty good day I reckon. The pics are of Sonny wearing his new McLaren outfit (with VIP pit passes) sent by his lovely Uncle and Ruby forming a human pyramid with Phil Campbell from Motorhead and Kerry King from Slayer.

Friday, 23 July 2010

Zoe: Check us out (+51)

We've been having going HOME chats people... The eagle eyed amongst you will have noticed Sonny's rather bare drip stand. The TPN pump has gone, along with the morphine. Sonny's IVs have gradually been swapped for loads of tablets and we are currently having to prove we are responsible enough folks to administer them properly. It's quite simple, we have to prove we can give the right drugs at the right time. But, silly old us, spending months bouncing between different chemotherapy protocols with sack loads of hard core medication counts for nothing apparently. Oh no, no no dear, they have different standards in BMT and are quite different to the entire hospital. We are not allowed to keep the drugs in the locked drug cabinet hung on the wall in his newly refurbished room - its forbidden on BMT. So why have a cabinet on the wall then? Instead, rather gratingly, we are being tested and marked for efficiency and after a few days we'll be told if we've passed.

I've just been to ask for the tablets for the first time. It wasn't straightforward, but nothing ever is.

Hello nurse, I've come for Sonny's medicines. Ok, would you mind waiting a minute, I'm busy at the moment (fair enough, they are pretty busy all the time). Eventually, after a short search for the key involving all the nurses on the ward the cupboard is opened. Me, sorry do you mind if I have these in tablet form - these are soluble. Oh, they are not available in any other form. Yes they are, we have dispensed them before. Really? Don't worry, they'll just make his tongue fizz a bit. Oh, that doesn't sound very nice for him. Would you mind ringing pharmacy to get the correct tablet please. Dr has to be bleeped... meanwhile I spy a box of different tablets poking out which looks rather familiar (they are the box of meds I brought in to get relabelled/dispose of safely. There might be some in that box down there, those all look like the medicines I brought in. After a good rummage I find the tablets I'm looking for. Surely a point to me. The morphine tablets needs to be counted in and out of the box and signed for by another nurse. There are over 30 of them - he only needs a 1/4. Finally I'm satisfied all the tablets are present and correct and so is the nurse. Only, she like me doesn't quite have the right authority to give them to me so we have to wait for another nurse to be free to sign to say that this nurse has checked that I can have them to give to Sonny. Total time spent: 25 minutes. I'd better get a certificate after all this. With a ribbon on. And maybe letters after my name. Hmmmmm.

Thursday, 22 July 2010

Gavin: Quick one (+50)

Despite last nights wobble, Sonny made it home again today and chirped up considerably. I arrived to find Zo making cup cakes for Ruby's last day at school tomorrow and Sonny requesting pretzels after the popcorn didn't taste of anything. Yep, it's pretty crazy when we all get together.

Wednesday, 21 July 2010

Gavin: Danny Shittu (+49)

The day started well with more of Sonny's infusions being changed to tablets. These are the steps that need to be taken to get him home at some point. We were presented his list of tablets that we'll soon be administering which ran to around 50. Most of them had '3 months' and '6 months' next to them except for Penicillin which simply said 'lifetime dose'. I knew he would be on some tablets for the rest of his life, I just didn't realise it would be that one... the one you avoid giving to kids so they can grow some of their own bacteria. I have to say it hit me harder than I thought. Whatever, it's not about me. He had another good day only turning at around 4pm and starting a temperature so we shot him back to the hospital early. He perked up pretty quickly and wanted crisps so Zoe had the brilliant idea of buying the entire range of Walkers World Cup flavours and recreating the entire Competition a tiny crisp at a time. Unfortunately, despite being one of the best things I've heard of in ages he went all France on us. He managed the group stages, but the poo bowls won on penalties.

Tuesday, 20 July 2010

Zoe: Mamma Mia (+48)

Sonny has been working hard for the last month to try and come off his TPN (liquid nutrition). Its been a very slow process and nobody thought he'd be able to do it without starting with an NG tube (tube down the nose to his stomach). So far he's managed to avoid the dreaded NG tube. He really really didn't want one and they are incredibly common here. I reckon, three out of four kids having chemo must have one at some point in their treatment. Anyway, he was adamant that he didn't want one and with good reason too - he's gone and done it without. Last night the TPN came down. Come on!

The first week was a total non starter and didn't go well but for the last three weeks he's been working with a specialist dietitian. When you start to introduce food you begin to realise the incredible enormity of what his body has been through. We've been advised to do it in the way you'd start to introduce solid food to a baby - by introducing a different food group every other day. We actually started with 2 spoons of rice which was about what Sonny started with all those years ago. Anyway, as you can see by the photo its working. Today he was given the green light to eat some more complex foods (stuff mixed up) so he was able to tuck into a proper spaghetti bolognese (without the parmesan though - cheese is next week).

Monday, 19 July 2010

Zoe: Superhero (+47)

Sonny has properly been making me laugh today. While he was waiting for his morning infusions to finish he secretly stuck a note to my back saying "I've had bottocks, I've had bottock, I've had bottocks" (botox) ha ha.

Sunday, 18 July 2010

Gavin: Quiz Akabusi (BMT+46)

Sonny loves a challenge. And, if cancer wasn't a big enough one for him he's now determined to rack up more miles than Lance Armstrong on his new mini-bike. Today he did 30 minutes on the next gear up and he's also writing all the relevant information in his new 'exercise stats book'. For those that have spent any time with Sonny will know he properly loves a stat. If we could just find a pub quiz that has a 'football and cancer' round we're so going home with the bottle of wine.

Gavin:The cycle of life (BMT+45)

We know days will go up and days will go down, but this morning started with a thumbs up from Sonny about 10am while he was dozing and got better from there. The play specialist bought in a little cycle machine that he loved and then clocked up a quarter of a mile on without blinking... he's already asked that we turn up the resistance a bit as he feels he's in first gear. Then, our super nurse got him off all his infusions by 1pm so we went home where he managed to eat a small bowl of pasta and tomato sauce. Yeah, that's proper hot food that he proper enjoyed. If I could snap today off at midday and dip it in gold, I'd display it on my mantlepiece with the inscription 'perfect'.

Friday, 16 July 2010

Gavin: Now this really is important (BMT+44)

Sonny has set up his own Fantasy Football League called 'Sonny side up' Basically, you need to click HERE to set up your team and then click on leagues on the right of the page and join his by entering 19891-7654. Couldn't be easier. He's dead excited about having a big league so, even if you don't know anything about football, it would be lovely for him to have you involved. Just pick those England legends to form the backbone of your team and you can't go far wrong.

Thursday, 15 July 2010

Gavin: An emotional night (BMT+43)

There's been a lot of desperately sad activity this week with three kids crashing during the night and being taken to Intensive care. We learnt this morning that the people on the ward we have the most affinity with and have shared more than just a laugh in the parents room lost their daughter in the early hours.
It brings a set of emotions I've never had to deal with. On one hand I'm devastated by their loss and it opens up the fragility of all of our situations. On the other, I know that we're only joined as a group by a Bone Marrow Transplant and the underlying causes of why you're there can range immeasurably. Finally, I can't afford to care about them or anyone else on the ward. This is probably what upsets me the most.
I'm crying as I type this. Maybe I care more than I think.

Wednesday, 14 July 2010

Zoe: Chaos is restored (+42)

She's back! Looking better than ever... we missed her lots.

Gavin: Quick one (BMT+41)

Ward round with the big cheeses today (Tuesday, I'm a day late) who think Sonny is doing well. His temperatures and general grolliness could be GVHD or an infection but as the top man pointed out, it could be 'one of a hundred different things'. Reassuring.

Monday, 12 July 2010

Gavin: See spot run (BMT+40)

I kicked off tonight after Sonny spiked a temperature despite being on regular paracetamol. Except he wasn't because Doctor Dickface decided to take him off regular to see what happened. Basically, paracetamol masks temperatures so if he spiked they would give him antibiotics. Except he's already on antibiotics, antifungal and antiviral drugs which means nothing would change at all apart from him feeling rubbish. Basically, he's going by his 'My first BMT Book' and following it to the letter rather than talking to us to see what's really right for Sonny. Let's hope tomorrow Doctor Dickface is replace by Doctor Do Little until the proper Consultants show up.

PS: We've hit a magical figure of 50,000 hits on our blog. Thanks to everyone who reads, comments or simply thinks of Sonny. It really does mean a lot to us to know you're all there. x

Sunday, 11 July 2010

Zoe: Petrol Head (+39)

Feeling much brighter Sonny took his place today in the stands to watch the British Grand Prix. The hat is a present from Lewis Hamiliton. Yeah, check him out, signed and everything...

Saturday, 10 July 2010

Gavin: Ruby, Ruby, Ruby, Ruby (BMT+38)

Ruby is ill. The grumbling tummy and sore throat I put down to too much party food and singing at her friends Lady GaGa party turned into a proper sore throat and temperature overnight and, despite her best efforts to get her kick boxing outfit on for this mornings lesson, she looked terrible. Unfortunately, in these situations there's only one thing to do so I packed a bag and took her to my lovely parents who were ready and waiting with the TV remote, blanket and a cold flannel for her head.
It's just horrrid for Rubes when she gets ill. We've spent the last year sharing round the clock care of her brother but the minute she gets a sniffle we have to pack her off. She's the only kid I know who pretends to be less ill than she actually is. In fact, she's the only kid I know that thinks all of this is perfectly normal. She's amazing, but she's so going to be emo to pay us back in a few years.

Friday, 9 July 2010

Zoe: Too tired to think of witty headline (+37)

Not sure if Sonny's recent dip is entirely GVHD now. They think there is some GVHD but its so 'low grade' they want a bit more of a fight so they are going to start to reduce the dose of another of the immune suppressing medications he's taking. His tummy has settled down but he's still spiking high temperatures which could be a viral infection as his 'markers' have gone up from 7,000 copies to 36,000 copies. This sounds horrendous but the doctors say a viral infection is to be expected and they have to treat the smallest sign of it. 36,000 is a tiny number in medical land. If thats true then why can't they just say 36?

Thursday, 8 July 2010

Gavin: Russian Roulette (BMT +36)

Sonny didn't have a great day today but we have been warned that this bit could be bumpy so we're ready for it. The quality of nursing care you receive now makes a big difference so it's always an apprehensive moment when you get to 8.30pm and the door opens to reveal that nights nurse. Of course, most are brilliant but a few haven't quite grasped the basics (slamming doors, talking, turning on lights etc.) There was one agency nurse on Elephant ward that we refused to look after us when it became clear that she didn't know her aspirin from her elbow. To be fair, she probably wasn't that bad, but she was given Sonny to look after at a very stressful time (on the back of the Great Chemo Cock Up) and frankly, had a lack of understanding around his fragile state of mind. So, when she walked in last night we both froze and Sonny went red in the face through panic. I decided there was no time for niceties or worrying about her feelings as she was after all being paid to be there. I put on my bravest face and shot out to tell the nurse in charge that she needed to be swapped to one of the less discerning families who look like they'd put up with a Chuckle Brother doing their obs.
To be fair, they didn't bat an eyelid (I took this as a sign they knew she was rubbish which helped with my guilt) and we got a new one. I proudly went back to Sonny to inform him that I'd sorted it to find him throwing up. The wide-eyed-red-face was nothing to do with the nurse (he hadn't even remembered her) but the start of nausea. Which means I'd upset a few people, caused issues with the rota, looked obnoxious to the rest of the staff, not been there when Sonny needed me and all realistically for nothing. Yeah, go dad.

Wednesday, 7 July 2010

Zoe: Sofa so good (+35)

As long as he's well enough, Sonny continues to be allowed home every afternoon. Another plus for London living (wink). Sonny's consultant has called this bit the 'boring bit'. We don't mind boring. We think boring is pretty underrated actually. It feels mighty luxurious compared to some of the other emotions we have felt during this schlep called cancer.

Tuesday, 6 July 2010

Zoe: GVHD (+34)

After weeks of waiting we think Sonny's recent dip is GVHD. Yippee! Really horrid and awful for Sonny but kinda wonderful too as its not too aggressive as we've been wanting it to happen. Yippee! - I'm not going to apologise for being repetitive.

Monday, 5 July 2010

Gavin: ThirtyThree BMT(+33)

No major change. Sonny still feeling rubbish. Couldn't go home today according to the doctors. Whatever.

Sunday, 4 July 2010

Gavin: Fingers crossed (BMT+32)

Sonny didn't have a great day today feeling pretty rough and hovering around the 38° mark. He still managed a couple of hours at home which really perked him up but, back at the hospital he's spiked so we're now waiting on the Doctor to see whether they start antibiotics. Oh joy...

Saturday, 3 July 2010

Zoe: Couch Potato (+31)

Sonny was allowed to spend a few hours on the sofa at home again today. Absolute bliss it was. It seems really cruel having to take him back to the hospital in the evening but it has really perked him up. Although we enjoyed our outings at the time, it certainly beats our rather gentile strolls around Bloomsbury and Holborn. There's not a great deal around here to amuse a ten year old boy apart from admiring a few flash cars in Grays Inn Square and there's only so many times you can mention walking past Charles Dickens's house whilst avoiding large groups of germ riddled tourists on literary tours.

Friday, 2 July 2010

Zoe: Taste of freedom (+30)

Today was ward round and the super amazing chief of BMT (the one who walks on rose petals) suggested that Sonny should watch Holland v Brazil at home on his sofa... what a great result for Holland and us. Back at GOSH now but hoping for a rematch tomorrow...

PS: he also said the cats could stay... so Ruby happy with that result too.

Thursday, 1 July 2010

Gavin: Food groupies (BMT+29)

Despite last nights concerns, Sonny seems to have sorted himself out. It's difficult not to see a temperature, chest pains and a drop in blood pressure as anything but connected but the consultant thinks they may be a muscle pain, a random spike and too much fluid, i.e. separate incidents that happened at the same time. Or not. Once again who knows, except he's got better and we now know not to worry too much unless things go downhill. Today he went out and ate a whole rice cake and some boiled chicken. We have to introduce a new food group every day after he's got used to the last so tomorrow is melon and soft fruit to ensure his stomach can cope with new things. I can't wait until he's ready for the food group 'chips' so I can walk him up to the Friars Delight on Theobalds road and talk football on the way back with plenty of salt and vinegar. Lovely.

Gavin: Quick one (BMT+28)

Another good day with Sonny saw him venture out again and start to eat a small amount. However, in the evening he developed some chest pains and his blood pressure dropped a bit so it all got a little hectic. All seems to have sorted itself out so we'll wait for the proper doctors today to tell us what they think. Will blog properly later.