Saturday, 31 October 2009

Zoe: Happy Halloween

So much of this has been about Sonny but tonight Ruby really made her presence felt and it was amazing to really put her first for a change. Traditionally this is Ruby's favourite night of the whole year. She even rates it above her birthday and Christmas however, with it being half term we were only too happy for her to go and spend some time with Nanny and Da. But on Thursday night she rang us in floods of tears saying that she wanted to come home. It was vaguely comforting knowing that Halloween and the delightful ritual of trick or treating formed the root of her worry and we were only too happy to oblige. I vaguely went into mild panic as I'd done nothing about her costume and woke this morning to Gav texting me about the location of cloaks etc. After a quick phonecall she was quickly reassured that she could be a Halloween Angel (thank god for Nanny's angel costume from 2 years ago) and a bit of gold eyeshadow and talcum powder. We returned triumphant with a loot to rival Woolworth's pick and mix counter.

Meanwhile, the beautiful Agent Norwood was working her magic and delivered a spectacular competition winning pumpkin to Sonny which was displayed proudly for all the children on the nurses desk. Sonny amused himself with trick or treating nurses while relaxing on his bed feasting from a huge box of halloween cupcakes delivered by the Fordes whilst basking in Arsenal's 3-0 hammering of the Scum and looking forward to Hamiliton starting in pole position tomorrow. What a day...

Friday, 30 October 2009

Gavin: The secret diary of Sonny Anderson age 9 and 3/4

Friday 30th October

2am: I needed a wee so dad got up and got me a bottle. I sat on the edge of the bed while he wrote it all down in their special pad that records everything. As he went to pick it up he grabbed it from the wrong end and sprayed it all over my bed. Took him about 45 minutes not just to change everything and wash down my mattress but to rinse out my teddies and get rid of the soaking paper he'd left at the end. I didn't mind as I'm quite chatty when I have a wee so we discussed football and the game at the weekend. Dad didn't say too much as he seemed to be concentrating on the job in hand. I laughed a lot though.

9am: Mum bought in coffee and stuff for dad and he got my pills ready. Dad seemed a bit short with mum and mentioned something about 'a 2 hour fitful nap'. He must mean the afternoon one he normally has at work.

10am-3pm: Lots happened. Nanny and Da came up with Ruby and me and mummy did loads of Physio. I shouted at all of them as Nanny had bought some chocolate and I can't stand it. I heard mummy whispering to nanny about 'mood swings' and 'steroids'. She must be talking about grandma going through the change.

4pm: So who's great idea was it to give me not one but two injections for swine flu? Frankly, they bloody hurt and I'm really upset that despite having everything pumped in me for the last three months they still think it's not enough. I AM NOT A PIN CUSHION. Uncle Paul came to see me who's just got back from building a school in South Africa for under privileged kids. I was too upset to really talk about it with him. Dad ate some of the chocolate.

6pm: All drugs over which means I'm not attached to anything. My amazing mum had booked a table at Ciao Bella and the four of us went out for dinner. First time since god knows when. I had meatballs and spaghetti and a lemon sorbet. There's a couple of steps in the restaurant and I gave them a go too. It was a terrific dinner and we all had a really nice time doing impressions of master chef.

8pm: Just me and mum here now as Dad has gone home with Rubes. Jamie Oliver is on (more cookery shows) and there is also some talk about me coming home soon if I carry on improving like I am. As Ice Cube once said "today was a good day".

Wednesday, 28 October 2009

Zoe: Chip Ahoy!

Sonny is quickly building up the strength to walk much further distances without support but his feet are still giving him some trouble so today the Physio team made him a clever pair of boots to wear which will help him recover from the nerve damage caused by the chemo. He was slightly hesitant as he thought they were going to be made out of plaster but they were actually quite light and comfortable. After that his day just got better and better with a constant stream of visitors. I thought he'd be exhausted but the steroids must be kicking in as he shouted up a trip to the chippy in his new sporty wheelchair before settling down to an evening of Carling Cup entertainment - Arsenal 2: Liverpool 1.

Sonny has sailed through today - some kids do apparently!

Tuesday, 27 October 2009

Zoe: In no particular order...

The X Factor finalists visited the ward today. They are recording 'You are not alone' for Great Ormond Street - sob. They were all pretty cool actually considering how uneasy we felt when we first landed there and they spent ages with all the families that wanted to meet them. However, Sonny refused to cooperate and chose to spend his photo opportunity asleep grrrrrrrrrrrrrrrr! Never mind though eh... we soon got amongst it and chatted to the lovely Lucie who Ruby is voting for as 'she looks like her teacher Sophie apparently'.

Monday, 26 October 2009

Zoe: New beginnings

Big day today with two major happenings. Firstly Sonny has been eating well enough to come off his TPN which means he is no longer being fed through his line. This is a really big deal as it means that provided he is well enough we can go outside for a breath of lovely London air as he won't be attached to his drip stand 24/7.

The second and probably most anticipated event was that Sonny was declared 'fit' for chemo and finally started his new treatment protocol for Classical Hodgkins Lymphoma. Lets nail this sucker. All hopes of cruising through it this time were quickly parked as he was soon busy puking despite every anti-sickness drug being painstakingly administered prior to starting. Sonny remained stoic and calm and its quite chilling to see how used he is to feeling quite rubbish. I've now got to try and encourage him to eat so that he can swallow the small pile of steroids that are also part of this protocol which ironically can't be taken on an empty stomach.

We are cheering ourselves up with the magical healing powers of Peter Kay.

Sunday, 25 October 2009

Gavin: The damned, err Arsenal

It was another great day at Ormond Towers, with Sonny doing plenty of physio and going for another walk to the end of the ward. Unfortunately, he was plunged into his deepest low since glandular fever when The Mighty Arsenal™ managed to throw away a 2 goal lead to end up drawing at West Ham. Between 6 and 8pm he was distraught, blaming Wenger's tactics and likening Mannone to his great granny Jean (89). As you can see from the picture, it took our full culinary skills in putting together another North London Platter to bring him back around.

Saturday, 24 October 2009

Gavin: Locums motives II

I awoke this morning to see the Locum on call was the one that had put the fear of god into me a few weeks ago. He worried me so much that although Sonny has some funny marks on his legs, I certainly wasn't telling this doctor about them in case he decided on immediate amputation. However, he came in to examine Sonny and looked genuinely pleased with his progress, saying lots of great things like 'I can't believe he looks so well' and 'it just shows you that anything can happen'. He finished off by saying to Sonny 'Hodgkins is easier to treat and if you keep getting fitter that is the best medicine', which is a bit better than his last parting shot (click here to read). I wanted to be smug and wear a 'I-told-you-so-face', but instead was ridiculously pleased, relieved and grateful for his positive words.

I now have to go and prepare Sonny's lunch of mini scotch eggs, a bread stick, homous, cheese straws and some Jelly beans. A sort of Tesco Value tapas really.

Sonny: I hate PET scans

Yesterday I had to have a pet scan which started off quite exciting - I got there in a cab. When we arrived we took the lifts up to Nuclear Medicine, they saw us very quickly and took us to a room with 3 beds. I had to stay in this room for the next hour and a half. I was just there while they got my contrast ready. They then came in and injected the contrast through my Hickman line, then I had to stay still for one hour while it went through my body. That was the most annoying thing I have ever had to do. The worst thing about it was that near the end your feet go so numb it starts to hurt which makes it difficult to stay still. When they said I could move again I went, you could say, crazy with wiggling. I was the equivalent of a monkey chasing a banana.

Thursday, 22 October 2009

Zoe: Taxi!

Sonny left the hospital today for the first time since he arrived back on 8th September. Although exciting as it was to leave GOSH it wasn't really the family day out you'd normally look forward to as we had to go down the road to UCH for something called a PET scan in a rather alarmingly titled place called Nuclear Medicine. The journey was made more enjoyable though as the pre-arranged patient transport didn't arrive so we had to hail a black cab (quite a treat in these credit crunch times). Sonny was then bravely injected with a mixture of glucose and something from The Matrix and then had to remain absolutely still for an hour while this potion travelled round his body. He then had to lie still for another hour while they did the scans - it sounds easy but try it and see how long it is before you want to scratch your nose or twitch your foot. Sadly, no glamour on the way back either as the proper transport arrived to take us back again but Sonny did enjoy being towed up the ramp in his wheelchair.

We hope to get the results of the PET scan back tomorrow. This will enable the team here to stage his disease and decide on his treatment. It's all more than a little complicated as he has already had quite a lot of the chemotherapy they would normally give for this disease already but once they have worked out all the clever stuff he should be able to begin the correct treatment when his blood counts are back to normal early next week.

Wednesday, 21 October 2009

Gavin: You lookin' at me?

Sonny's hair was starting to grow back due to the lapse in treatment. Unfortunately, it was growing back in the fashion of a POW so I decided to cut it off again. During shaving, Sonny asked me for a mohican. I'm finding it very difficult to say no to him at the moment. Sorry mum.

Tuesday, 20 October 2009

Ruby: my view

when I first found out that sonny had cancer I felt like 200 bombs had hit me. I was scared and frightened about what was coming up. I went to sleep that night and felt rubbish I didn't like doing anything but then my dad came out and I had a parent with me every night. When sonny went back to London I went to stay with my nanny I went to see sonny ones every week on Friday and stayed with my mum and dad for the weekend. I started school and my mum and dad had to come home early every night just so they could feed me I sometimes went with one of sonny's friends to the hospital that meant I could see sonny more often and I went to my friends houses most of the time and have dinner there.I am feeling allot better now sonny is in good care but what I think has happened is that my family has grown stronger and is getting stronger as we go on.

Monday, 19 October 2009

Gavin: A new diagnosis

The results are back from the world's leading histopathologist and Sonny doesn't have Non-Hodgkin's Lymphoma but Hodgkin's Lymphoma, a completely different strain of cancer that requires a completely different treatment. Of course, it's also a lot rarer which is completely in line with all the other bloody rare things Sonny has had during his treatment so far. Basically, the effects of either disease are the same and although there are plenty of differences in the two, we've learnt that it's irrelevant - our goal remains to get Sonny better and we'll worry about the rest after that.

The eleven or so weeks he's now spent with the wrong diagnoses isn't too drastic as many of the drugs at the start of the treatment would be used for this cancer. And, although we stopped therapy for around 5 weeks, this was due to his complications and would have been the same regardless of which cancer he had.

The only real change at this stage is that we now fall under the Oncology team rather than the Haematology Oncologists ('He-mongs' as they're referred too). We've met our new consultant who seems good (you know, he looks bright and when you google him there are lots of letters after his name) and of course, there's plenty of crossover between the teams which means we're not starting completely afresh.

Tomorrow there's a big MDT (Multidisciplinary team meeting) over at UCL where lots of incredibly bright people will work out a precise protocol for Sonny. This will ensure that future problems that may be caused by a generic protocol are avoided and to make sure everyone agrees a way forward before the bleeping of infusers starts again.

To top off this great news (it is, trust us), Sonny is doing physio every day, standing up on his own and (gasp) sitting in a chair for over an hour while putting away all the match attax that are gratefully coming in. Our physio has said he should be well enough to hit the gym at the beginning of next week. Maybe that visit from Batista will spur him on after all.

Sunday, 18 October 2009

Gavin: The perfect gift

Despite Sonny getting some amazing presents from everyone not to mention the food parcels we continue to receive as a family, people are still asking us what they can get for Sonny. This morning, I went and bought a Match Attax starter kit and we spent a great hour putting all the players in the right places. So, if anyone still wants to get anything for Sonny (although seriously, no one needs too) they're 50p for a pack of 6 cards and just one pack would cheer him up. Send them in to Sonny Anderson, Elephant Ward, Room 12, Great Ormond Street Hospital, Great Ormond Street, London WC1N 3JH. Lovely, thanks.

Saturday, 17 October 2009

Zoe: Small steps

Sonny left his room today to whoops of encouragement from me and the nurses. He didn't go far, just to the IV medication room opposite his cubicle door and back but the courage and strength it took from him was amazing. Afterwards, he said his legs felt like dust. As well as having to deal with the effects of chemo he is also having to rebuild himself after spending the last six weeks in bed as a result of the various infections he's been fighting. He finds the weakness in himself terrifying and the physio required to build himself back up daunting and exhausting. I'm watching his efforts bursting with the simple pleasure of watching him move again.

Friday, 16 October 2009

Gavin: Masterchef

For those of you that we haven't told, Sonny is obsessed by cookery programs. Apparently, it's a common side effect of not actually eating but being fed through a line, which is why it was so nice when our friend Jo organised for him to decorate some cakes. But these weren't just any cakes. They came with hats and aprons and little bowls of sweets and everything he needed to turn him into the next Ludovic (I know he's out, but he should have won surely). Here's a before, during and after photo. The last one is him doing his best Michel Roux impression "they're a little underdone but I like them like that". We've now spent the rest of the day sucking on spoons for too long and saying "this has some incredible textures my friend".

It may help to watch at least one episode of Masterchef to understand this post.

Thursday, 15 October 2009

Gavin: Infectious behaviour

Today the infectious diseases team decided that Sonny wasn't contagious anymore and took down the sign on his door. This means, if he feels up for it, he can go for a ride around the ward. What it doesn't mean is that he's infection free, just that he's making less snot or whatever to spray over some other kid. I've told Sonny that if we go for x-rays I'll probably say he still is a risk as you get seen a lot quicker.

Sonny: Moose!

Wednesday, 14 October 2009

Zoe: It's not what you know...

I've been thinking today about the strange number of connections we have to Great Ormond Street. Gav's first humble little office was in Rugby Street, on the corner of Lamb's Conduit Street. In his first year we spent Christmas Eve in the Lamb and it is now where we would hang out if Sonny's well enough to go to scouts on a Tuesday evening. I'd often take the kids to Coram's Fields too while Gavin was working over the weekend and we'd all meet up for lunch at Ciao Bella being vaguely aware of the people passing by our table pushing their kids in wheelchairs, often accompanied by a nurse and a drip stand. I'm still numb to think that we have become one of them. We are fortunate that we know this area really well - where the bus stops and where to get a good sausage sarni (Sids if you are interested) - some families arrive here having never visited London before which must be absolutely terrifying for them on top of everything else that they are having to contend with.

We also know people at the hospital. Our lovely friend Jo works at the school here along with one of Gav's colleague's mums (which mean's he gets a nice teacher and fun work) and one of Sonny's real teachers has a sister who is a very senior nurse here. She pops in from time to time to say hello on behalf of school and occasionally has to nurse him. Our mate Andy also has a chum who is a nurse on Safari, the outpatients ward that we hope to get back to someday. But the strangest coincidence happened today when we met with Sonny's consultant to discuss the results of his latest biopsy. She explained that the lab had sent it to UCH to be looked at by a larger team of specialists who would be running more tests on it. The professor heading up the team turns out to be Sonny's headteacher's father... no pressure, but if he hurries up we can get him back to school a bit quicker!

Monday, 12 October 2009

Sonny: Comment comment

We love reading your comments. Its great to know you are thinking of us and we love reading out your witty little remarks and questions to Sonny. Sonny has dictated the next bit...

Hi Louis - Yes my drip stand makes loads and loads of noise and I find it hard to sleep at night. I did get your music mix and thought it was very funky. If you are looking for a game I would recommend Heros Over Europe. Your mum may want to check it out first but if she says its alright I'd get it if you can. I don't know what I want for my birthday, I haven't given it much thought so now you've got me thinking. My Dad has bought me a PS3 and the games I've got are Fifa10, Heros Over Europe and another game called Infamous.

Hi Jamie - I am quite bored because I have to stay in the same room all day and I'm not allowed to meet the other kids on the ward as they have put something on my door which means that people are not allowed to come in unless they wear an apron and gloves. I've got a long list of things I want to do when I get home but I don't feel like talking about them yet.

Hi Jamie - Zoe here! He could have met Gary Barlow... he was outside our room handing out a Pride of Britain Award to one of the boys who used to be a patient here. Sonny refused to indulge me I'm afraid so I had to remain in our room looking cool and aloof. He didn't care that he was in the most famous boy band ever and would have preferred Chris Moyles having only ever heard of Gary Barlow in the context of Comic Relief and getting lots of celebrities to climb a large mountain. I've also seen Dr Who in the hospital foyer wearing a very, very long scarf and this year's winner of the Apprentice was in the canteen the other day flogging a rather intrusive information/telly screen type of thing.

Gavin: Locums motives

After Zoe left last night and posted below, the scare levels went up. The Locum doctor looking after Sonny explained that his lung capacity wasn't acceptable, either caused by the puncture wound or from a new complication where the tumor had created nerve damage meaning his diaphragm had risen up a few inches into his chest. Alongside this, the cancer was fighting back. By releasing cells that create microscopic holes in the veins, fluid is released into the surrounding tissues rather than flushing the disease out. He finished with: 'this boy is on very thin ice'. And he delivered that in front of Sonny.

It was a tough night to say the least. Every bong of a dipping heart monitor and every laboured breath from him meant I pushed the call button. I had no idea how this trio of problems would manifest themselves and, despite begging his pulse rate to come down for the last fortnight, if it now dropped below 70 I shat myself.

This morning our consultants talked us down. A further x-ray showed the diaphragm had returned to it's rightful place (an unfortunate blip that happened just when the x-ray was taken hopefully) the fluid retention had been sorted with a shot of albumin and the lung capacity had always been fairly low considering he has two golf ball sized lumps pushing into them. The Locums frankness was raised at ward round by our nurse (god love her) and we were given an apology from the team. This evening when I'd left to get Ruby, Zoe asked our main super-consultant where this weekend ranked in terms of our league table of scares. "Moderate" was his reply.

We're both much happier. Sonny continues to improve in our uninformed eyes and there's no mistaking that his blood pressure, pulse and temperatures are so much better. We cannot see what's going on inside his body but we can read a heart monitor and watch him play on the mac.

What all this really goes to show is that whatever information we’re given and how that makes us feel, those feelings have no actual bearing on Sonny and his situation. And, although the locum was definitely too blunt (especially in front of Sonny) he was simply calling it as he saw it.

My levels of pragmatism are at their highest. If anyone wants me to resolve a domestic dispute now is a good time to ask.

Sunday, 11 October 2009

Zoe: Intensive scare

Sonny has been exhausted following the biopsy on Friday. He is now in a lot less pain from the nick in his lung but the disease itself has been causing a few problems with a drop in Sonny's blood pressure, fluid collecting in the wrong places and more reliance on oxygen. The good news is though he is back on chemotherapy so these symptoms should clear up when the chemo starts to work its cell killing magic. Our own emotional state was not helped by the fact that it was a weekend - the nurses are over stretched and numbers are often made up with agency staff. Although highly experienced our nurse yesterday normally works in intensive care and her intensive care of Sonny ended up totally freaking out Gavin and I into thinking that his situation was going downhill when in fact they had everything perfectly under control and were already one step ahead in terms of making him more comfortable. Or, her swift intervention was needed... we'll never know.

Saturday, 10 October 2009

Gavin: Now THAT'S a drip stand...

Friday, 9 October 2009

Zoe: Another Biopsy

Sonny had his biopsy today - the doctors said it went well. The anaesthetist warned us that there may be complications due to the location of his mass so we were incredibly relieved to hear him shouting that they were all 'poor' and 'stupid' when we arrived to collect him from recovery. They took two needle samples from his left side but were unable to take any from the new mass on his right as it was too deep so fingers crossed that they have enough good tissue to make a complete diagnosis this time around. Unfortunately, they nicked Sonny's lung during the procedure, hence the shouting, so he is now really uncomfortable and needing morphine but luckily they didn't do anything too serious although frankly I could have killed them plus they also chipped one of his perfect front teeth which seems really trivial in the grand scheme of things but hey give the lad a break eh.

Thursday, 8 October 2009

Gavin: Questions, questions...

Right, response to comments that have been left:
1. Sonny's birthday is 17th November 1999
2. Louis, Sonny hasn't been back to scouts yet but he really enjoyed it so when he's better he'll go again I'm sure. By the way, did you know I was cub of the year 1981?
3. The address of the hospital is Great Ormond Street Hospital for Children, Great Ormond Street, WC1N 3JH.
4. Rob, he has a future in medicine, not hairy bikers. He may get his stethoscope caught in a chain or something.
5. Alex was grounded for talking back to his father in front of his friends in a defamatory way. Quite right too.

Gavin: how are we?

It's completely natural that everyone asks us how we are every day. Finding out how we're doing and coping is obviously important to our friends as they love us as much as our family. The trouble is, its difficult to respond with anything more than 'we're fine' because it seems so inconsequential and irrelevant at this time. Truth is we're exhausted. I haven't spent more than three nights in the same bed as my best friend for nine weeks and, considering when something like this happens, all you want to do is discuss outcomes, hopes and feelings with them. Nights at the hospital give you 2-3 hours of broken sleep - but of course you don't mind. The mental strain on how you feel becomes allowable and the constant knot in your stomach is the norm. Talking about anything else seems to be some some of betrayal 'why would you not want to talk about my son!' which obviously is tedious for anyone outside of close friends and family - and frankly, it must be tedious for even them. If you spend an hour with friends you feel guilty. If you miss a call you panic. Never before have I cared so much about poxy phone chargers and I've learnt to text as qkly as n 11yr ld. I've lost a stone which in all honesty is probably a good thing. Ruby seems fine. Although I'm sure pschycologists would be banging down our door and telling us otherwise, her fears are about being away from the family for a night which is entirely understandable and equally manageable. We're keeping a close eye but making sure she thinks Sonny has something like a bad flu. It seems to be working although we never underestimate her intelligence and love for her big brother.
Please keep asking us how we feel as it's important to us to know that you care. But as I say... we're fine. x

Gavin: one step forward...

After a drop in oxygen levels yesterday Sonny had an X-ray and Ultrasound. These show another tumor has grown in the other side of his chest. At this stage, the Consultants are unsure as to what this could be. Either made by the Lymphoma, a new infection created by the Glandular Fever or indeed something completely obscure, we have had CT scans this morning and the surgical team are reviewing those at 2pm to try to get to the bottom of it. From here they will go straight to a biopsy to determine exactly what they are dealing with and then start the right treatment. You begin to realise the unpredictable nature of these diseases means they don't respond the same every time. And this lack of consistency brings about complications. Sonny is actually feeling better. His temperatures are less pronounced and he has bouts of sitting up and watching TV etc. We can only take this as a positive as any improvement in his overall health will make starting the chemo again more likely. Considering he started this journey in Italy with more tumors and was on constant oxygen, we're still positive that although there seems to be a renewed urgency about his case, we are in safe hands.

Tuesday, 6 October 2009

Gavin: Travel insurance

OK, it's pretty rare that holiday insurance is used but I know of a couple of other trip accidents that have warranted a decent response. Which is why I'll implore anyone reading to have travel insurance whenever they go abroad. We had a yearly policy from which is obviously a call centre that links to a broader insurance company - hence it was about £3.50. Whatever, they were amazing. Putting us in touch with GOSH, organising flights homes for me and rubes and obviously, getting Sonny and Zoe onto a Lear Jet into RAF Northolt and then an ambulance into GOSH. But it wasn't just the big impressive stuff that was so err, impressive... they rang every day, we spoke to a proper oncologist as our liaison and they also flew a doctor out from England to travel back with Sonny to make sure everything was alright. I'm not into bigging up firms, and I'm sure they'll be rubbish if you lose your travellers cheques, but rock.

Zoe: Stake Out

I'm delighted to report that Sonny had a much more comfortable day today. He has been awake for most of the day and his temperature was even normal once or twice but don't get too excited its been off the scale a few times too. However, he ignored his teacher while racking up a hi-score of 103 playing zombie cricket to my sad 38, opened parcels (nice one thank you Rob) watched a repeat of Soccer AM and sat through a rather limp DVD called Big Daddy starring Adam Sandler while the medicine to clear his glandular fever slowly dripped in - the best day we've had for weeks really.

Meanwhile, Gav and I were still rather anxious following yesterday's cock-up. Nobody seemed to be able to tell us much up here so I played detective and tracked Sonny's consultant down, waiting for him to finish his clinic in a rather swish private wing of the hospital to make sure we had some answers today. Turns out it was cancelled because the theatre he was due to have the procedure in was too basic for someone with his complications but it would have been nice for them to tell somebody looking after him. Our consultant was still jolly cross and pardoned his French of yesterday and is trying to get him on the list tomorrow. The nurses were rather wide eyed when they found out where I'd been but I gave a wink to the kind one who had tipped me off.

Zoe: Gifts

A package arrived today for Sonny (nice surprise Rob, thank you!) and he felt bright enough to to sit up in bed to open it and even brighter when he saw that his status as Arsenal Stato Master was going to be taken to another level when he saw the contents: The All New Official Arsenal Miscellany and The Little Book of Arsenal - Mastermind here we come.

Sonny has been showered in gifts since he was taken ill - Santa is going to have his work cut out this year to top the dazzling array of extravagant, brilliant and thoughtful presents - I don't think the boy wants for anything and when he is better I'm sure he'll thank you all personally. There are two kind people he won't be able to thank though who sent us some packages that were too big to get through our letterbox - I'm really sorry but I haven't been able to collect them from the post office and when I tried to get them redirected they said it was too late... I don't know what has happened to them but hope they find their way back to you.

Monday, 5 October 2009

Sonny: A view from my bed

Sonny fancied writing about how he felt so I'm dictating....

Today was very annoying. The doctors said I was having a scan and I wasn't allowed to drink anything but it turned out I wasn't on the list for the scan so I'd been disabled from drinking for 5 hours for nothing. I feel so fed up. Very fed up. And that's it for today.

Zoe: Febrile Excuse

Today Sonny was very unhappy and anxious in anticipation of his endoscopy later today which was planned to see if there was anything suspect in his bowel making him so incredibly hot all the time. From past experience we knew he'd be one of the last on the list due to him being a big grown-up 9 and not 9 months old but by 4pm we were getting twitchy when we still hadn't been given a time to go down. At 4.30 our rather cross consultant had the unwelcome job of telling us that some muppet had cancelled the procedure on Friday due to the fact that he was febrile! Duh! Feeling helpless I went to plead with the gastro team to see if they could squeeze him in only to be told they'd all gone home. Not helpful grrrrrrr.

Sunday, 4 October 2009

Zoe: Guilty Pleasures

Under normal circumstances today would have real treat... Japanese Grand Prix live at 5am followed by a long snooze, my husband bringing up fresh coffee and the Sunday papers and all settling down to an afternoon with Sky Sports for Super Sunday. Perfect result with Arsenal cooly sitting comfortably back in the top four with a game in hand - if only Sonny could shake off this temperature we'd be laughing.

Saturday, 3 October 2009

Gavin: The bedside blog

Not much happened since yesterday to be honest. Sonny still switching between the odd smile and chat about his birthday celebrations to a 40+ temperature. They seem to have levelled things out a bit with pethidine every 2 hours in between the paracetamol - which helps. He had low counts last night (fairly normal for a kid in his position) so they gave him his first bag of blood to top up whatever was lacking. He was nervous, queezy and a bit scared (he didn't like the idea of someone else's blood in him, fair enough I reckon) but as with all these things, after it had gone in and he realised it hadn't turned him into the Hulk, he was much happier. The next one will be a breeze...

Friday, 2 October 2009

Zoe: Another Weekend

This time last week I was convinced that Sonny would be feeling much better by Monday if he had total bedrest and no visitors. How wrong I was and although he is stable his condition remains very much the same so instead of going over old ground I thought I'd talk about the nice things that have happened this week.

Our blog! Hi to all of you that have had a look and come back again for another peek and thank you for all your lovely messages of encouragement. So far we've enjoyed posting - it helps to vent and I think we are both finding it quite theraputic. If we don't blog one day, please don't panic it just means we haven't got round to it.

Sonny sitting up in bed: Gavin and I came back from a meeting with the doctor to find Sonny sitting up in bed reading Match Magazine... and Sonny laughing out loud at I CAN HAS CHEEZBURGER? book sent to him by his friend Andrew.

Food! Really huge thanks to Amelia for setting up the most amazing Islington food delivery service. It is absolutely brilliant of you all and we really really appreciate it. This week we have enjoyed a delicious Thai red curry from Franny complete with wine and profiteroles and a hamper the size of Mary Poppins handbag from Judy including freshly made pancakes with summer fruit compote and chocolate brownies - no pressure guys, we don't normally feast like Kings!

Champion's League: Arsenal winning 2:0 and Liverpool's defeat.

Thursday, 1 October 2009

Gavin: The bedside blog

So, the ultrasound guys have just left as they came up to the room rather than Sonny having to go to them which was nice. Our lovely nurse organised that for us despite the on-call registrar saying he was ok to go down. I don't think they like to put the specialists out... the levels of hierarchy in this place is fascinating. Anyway, surprise, surprise, they couldn't find anything. Which means he now has 2-3 days to get the temperature down or as Zoe says below, its Endoscopy day Monday. That should be fun...

Zoe: Testing Times

Sonny's last bright moment was well over a week ago, enjoying a visit from his mate Reuben... since then he's not been right at all. I'm not sure if I'll be able to pull off the grateful, thank you for trying to fix my kid smile if I hear the word 'mystery' one more time. The weeny chink of light today following ward round is that they think he still does have Tcell Non-Hodgkins Lymphoma and not Hodgkins Lymphoma following the results of his CT scan yesterday which shows the mass has stayed the same. Before they can start chemotherapy again they need to find out what is causing the temperatures so he's having more ultrasound today and an endoscopy on Monday to check that he doesn't have an infection in his bowel as his tummy still isn't working properly. In the meantime the Infectious Diseases team have 'gone fishing' for all things horrible but they won't have any results for at least a week. The whole thing is unbelievably frustrating and really rubbish for Sonny, especially as one of the reasons for the high temperatures could be the revolting cocktail of medicines he is now on trying to knock out the cause of the temps in the first place - grrrrrrrrrrr. We just want someone to say when he'll feel better.

In the meantime I have been sent home for sneezing... so I'm now juicing like a mentalist so they let me back in.