Monday, 31 May 2010

Gavin: The next Tiger Savage (BMT -2)

We've tasked Ruby with coming up with an idea for Sonny's 'all-clear' party. She knows the ins and outs and what's gone on over the past 10 months so we're pretty confident it will be good. But, even I (and remember, I'm pretty high up on the boil on the arse of 'proper' advertising) was blown away when I spoke to her about what she'd come up with:

Ruby: So, Sonny's donor is American right?, so I reckon we should do a party called 'God Bless America' and hold it at the Diner on Upper Street which is an American themed restaurant and the kids (so the parents don't have to get all funny about it) have to come dressed as someone American, like a president or something, or a pop star and we all drink American beer, well the kids will drink cream soda and floats and Sonny is sort of the main President and stuff and we have to eat hot dogs and grits although I don't know what they are but it fits the idea... What do you think Daddy?

Think... THINK?... I pay people a huge amount of money to come up with this stuff and not only has she seen an angle (proper advertising speak) but has thought it through and given us a party that is not only memorable but achievable. I'd love to chat more but I'm currently writing applications for her to all the major agencies with the heading "remember Charles Saatchi? She pisses on him".

Sunday, 30 May 2010

Gavin: May day riots (BMT -3)

I lost it tonight with the staff here. Sonny's stopped absorbing tablets like before, so I requested he now has everything IV. The change on the system meant for some reason he was an hour and a half late for his paracetamol meaning his temperature soared and he felt shocking. When it was finally going in, the nurse explained the Doctor reckoned he would still absorb something, so they'd carry on with his other tablets. At this point, even Sonny was shouting 'so what about absorbing the rest of it?'. I know I'm not quite a medical professional yet but surely this is pretty simple stuff? And as they can infuse everything anyway what's the problem? I blew when she told me the doctor was late doing the system changes as he was called away to other sick kids. My suggestion to show me who that was so I could make a decision on whether they were more ill than Sonny was declined.
Nurse Inga-Hangover has just been back in to tell me the doctor has decided to write all Sonny's meds up IV after all. Which is obviously great, but it somewhat scuppers my plans to lurk in the sluice room and beat him with a bed pan until he did what I asked.

Saturday, 29 May 2010

Gavin: Alternative rules (BMT -4)

Sonny spiked a temperature today so antibiotics have been started. Hopefully, this is an expected infection rather than turning into anything really horrid as he deserves a break. Apart from being a bit more tired, he's still pretty chirpy. Four days in and we're learning all there is to know about BMT:

1. On entering the room, Doctors must ask either 'ooh, have you been to Canada?' when they see Moosey, 'who do you support?' on seeing posters of Cesc Fabregas or the old favourite, 'who's winning?' when they see him on his PS3.

2. Internet connections must be as far away from the TV as possible to ensure the maximum amount of cables are running across the floor. Incorrect aerial sockets must be used to give the correct levels of 'snow' on the TV picture.

3. Hair must be washed every day but no hairdryers are allowed in the room.

4. No jewellery or watches are allowed although I think my Prince Albert is safe.

5. Clothes must be changed everyday including pyjamas. Our clothes cannot touch Sonny's. Parents are advised to buy a selection of cheap outfits from Primark or they can just wash their clothes a bit more and not look ridiculous.

6. Food will be served at 4pm, far to early for Sonny to eat. Food must be consumed within 30 mins and not reheated. Therefore, simply throw food in bin to avoid going through the process.

7. When leaving the room, wash hands, remove apron, wait for red light to go out. When entering, wash hands, put on new apron, wait for red light to go out. Forget biscuits Sonny asked for his tea. Repeat.

8. Nurses won't want to do this every time you push the call button so will use the intercom. This will boom through the speaker and make you jump every time; "DO YOU NEED ANYTHING?'... 'No nothing love, I just push the button for a laugh obviously'

9. When anyone walks down the corridor, you must stare at them folornly. This makes the walkee feel like they're in some strange open prison whose inmates are all miserable and wear Primark leggings.

Friday, 28 May 2010

Zoe: Green Machine (BMT -5)

Sonny is driving a tank into a building online with his chum. The headset means they can chat with each other, which is pretty much like having him in the room with us. I’ve never been a big fan of new technology until now that is. I don’t care how many hours he racks up either. What are the alternatives… jigsaw anyone (not).

We had our ‘green chat’ today. They didn’t mention recycling once. It was all about how many times a day we needed to wash our hands, clothes, hair, bedding, teeth etc. Sonny has become very attached to his duvet and after a little negotiation he’s been allowed to have a duvet as long as it is changed every day. I mean the inside, not just the cover. Big shout out to Donna who kindly stocked up for us at Ikea before jetting off somewhere exotic. Ikea duvet got the thumbs up too by the way – very light and snugly apparently.

It’s only been four days and already my hands are bleeding and sting every time I wash them. After my rant yesterday about infection contamination I discovered I’d put my worn pjs in with all my clean undies. Rather sweetly, in spite of this mishap Gav has given me a new job title today - C.O.O.L (Chief Operating Officer for Laundry). We’ve got a fancy new machine to cope with the new demands and he keeps calling me for advice about tumble balls. Not sure if I preferred W.I.F.E (Washing, Ironing, Fking , Etc). As a dear pal pointed out, The Gav Regime™ is going to be a breeze when all this is finally over.

Thursday, 27 May 2010

Zoe: Insania (BMT -6)

Sonny has been great today. The drug that made him feel like he had really bad flu yesterday was given again today but as cleverly predicted by the nurses hasn't given him any of the bad symptoms he experienced last night. This is the drug to kill all his T cells which make produce his bone marrow. He'll continue to get this drug now until day 0.

Meanwhile I went to a parent meeting today. So far I've avoided these like the plague but it was kind of a three line whip to attend today as they wanted to discuss the move to the new refurbished ward next week. Turns out BMT is currently sharing the ward with infectious diseases - hence the airlock system. I freaked. These kids, bless em, are moving with us as their ward is next in line for a makeover. Now I'm not medically trained but it sounds crazy bonkers to keep BMT kids with kids that have stuff that is so dangerous that they are actually hospitalised together. According to the matron its perfectly safe but I remain to be convinced and I made rather a show of myself protesting. As long as we keep washing our hands all will be perfectly fine apparently. Hmmm we are all meant to wash our plates in the kitchen but whenever I go in there the sink is full of other cubicles dirty dishes so not sure if I can really rely on other parents to wash their hands and follow the complicated 'my child's infectious' protocol. When Sonny had paraflu a very senior nurse came in with her hand over her mouth instead of a mask. I rest my case.

Wednesday, 26 May 2010

Gavin: (BMT -7)

We're all getting used to new nurses, a new room and new doctors. It's not too bad on reflection but just feels odd... we've built good relationships with the nurses on Elephant Ward over 9 months and having to start that all over again is difficult. It's like a first day at work where you don't want to be a pain but you need to know where the photocopier is because you've been told it's essential. Except our photocopier is a chemo infusion and we'd really like to know where it is now please. "NOW PLEASE... sorry, I don't mean to be a pain" etc.
The main chemo started today and hasn't gone down that well. I'm not in the hospital so here's a transcript of texts...
G: All going in ok?
Z: Not really and he's very upset and screaming at the staff when they are trying to make him feel better. Horrid stuff x
G: Oh god, text me when you can
Z: The rate has been slowed to 2ml an hour and he's starting to chat x
(Zoe rang me but had to ring off as a doctor was coming in who we know)
Z: Lovely doctor was ok with our really special brave boy who everybody upstairs is amazed by. All his sats are normal and Sonny has settled right down. Symptoms will lesson once the infusion finishes in about an hour or so... blimey baby x
G: It's fine. This is the super juice that will make him all good. Tell him that from me x
Z: Doctor said the same... you blogging tonight or what?
G: On it now baby... give me 10 x

Tuesday, 25 May 2010

Zoe: The point of no return (BMT Day -8)

Sonny's donor has passed his medical so it all systems go. After another PET scan (his 6th) at UCH this morning Sonny finally went down to Fox ward today, where his Bone Marrow Transplant (BMT) will take place. The actual day of the transplant is called day 0 so from now on we are going to be counting down to it and back up from it.

Very strange day really. Sonny is really scared and Ruby is really sad as she won't be able to see her brother for weeks and weeks. Gulp.

As well as the whole getting to know you process with an entirely different team who've got to know Sonny really well, we've also got to get to grips with the tight rules surrounding BMT. I'll save the new rules for another entry but the biggest culture shock has got to be the airlock entry system on our room which feels rather like trying to gain entry into a bank on Finsbury Park. We've also been spoilt by the modern ward we've been in for so long and we are now in a rather dark, secret corridor with no internet connection - so no online PS3 games for at least a week guys. Thankfully, not for long though as the ward we are on is temporary as Fox is being revamped so we should be moving into a plush new suite early next week if the builders are to be believed.

Sunday, 23 May 2010

The Anderson's: Our weekend

As a family, this weekend has been amazing. We've eaten together, laughed together and of course shouted at each other. Sonny is pretty upset tonight as he really doesn't want to go back now he's had this taste of freedom. Can't really say I blame him. We really have had the best time together though. After this final push we'll be back together again soon. I guarantee it.

Saturday, 22 May 2010

Gavin: Time off for good behaviour

Yep, that's right. After working really hard to eat more so he could come off his TPN and Morphine, Sonny's been let home for the weekend. There was a brief moment of panic when he realised we'd have to inject a drug called GCSF into him daily (I think he'd rather have stayed than have us do it) but that was resolved by us agreeing to take him back for a couple of hours each day and then coming back again. Thank god we live so close to the hospital. Anyway, it's brilliant. He's loving it, we're all in the same house for the first time in 5 weeks and the sun is shining. Sonny has a chum round at the moment as blowing things up on his PS3 at home rather than blowing things up on his PS3 in the hospital makes the world of difference apparently.
Sorry for the terrible photo but I'm practically giggling up sick with the excitement of it all.

Thursday, 20 May 2010

Gavin: U.S.A U.S.A U.S.A...

Finding the perfect donor for Sonny isn't easy. We don't want a 100% match as the new immune system will simply go in, accept the cancer as the norm and not do anything. Too low a match and it will reject his other organs along with the cancer. The closest match found lives in America and is available to go through the procedure despite being given only ten days to do it rather than the normal eight weeks. There's still a way to go yet as they need to go through a medical and not bottle out, but we're feeling pretty good about them. It seems amazing to think that despite all the consultants, surgeons and professors, they're the only person in the whole wide world who can now realistically help Sonny.

Wednesday, 19 May 2010

Zoe: Making hay while the sun shines

Sonny is feeling heaps better. He's been able to come off his morphine pump and has steadily been regaining his appetite enough to come off his TPN (artificial feed) during the day. He's also been rather teary. This always happens when he feels better. I think it says heaps about how crap he has been feeling that he hasn't cried for weeks. Frankly, I can't think of anything worse than feeling better only to be told that you are going to be made to feel totally rubbish again and guess what - this time you won't be able to be cheered up by your chums as you'll be in isolation. So he's making the most of feeling good, enjoying eating chips in the park and visits from his lovely pals. Today he especially enjoyed a surprise visit from his cousin who cleverly avoided a lunchtime detention by bunking off school this afternoon to see him. Nice one Alex, thanks x

Tuesday, 18 May 2010

Gavin: Barry Venison

We met with the BMT team today who in summary, gave us the startling revelation that Sonny will have loads of chemo, feel terrible and then start to get better. To be fair, it was more involving than that, but we'll let you know everything when they give us details about the donor.
Sonny was having a great day until we started discussing BMT and one of the nurses remarked that he wouldn't be able to take Moosey down to the isolation ward as it wasn't brand new. This sent him over the edge so Zoe quickly made some calls and found out it was fine as long as we give him a decent wash. The nurse apologised for upsetting him and, as it had turned out fine, we all laughed it off. She won't be laughing quite so hard when she sees the present Moosey has left in her going home shoes though.

Sunday, 16 May 2010

Zoe: Bloody good idea

Sonny has been deliciously perky this weekend and even allowed his Mum the odd cuddle which was amazing. Due to the massive doses of chemo he's been needing lots and lots of blood products. Its becoming increasingly rare for him to actually receive blood that is his actual blood group. I had no idea you could substitute blood for different types so after freaking out that he was getting the wrong type the nurses patiently explained the pecking order of blood matches Sonny could receive. Anyway, yesterday he had O which is third on his pecking order of matches. Stocks are very low apparently so if you feel like contributing to the national cause please think about giving blood if you can.

Saturday, 15 May 2010

Gavin: Wem-ber-ley, Wem-ber-ley...

We had a great day today despite finding out that Sonny has an infection in his hickman line that will need more antibiotics to sort out. We made an airfix fighter plane, went for a walk around the ward, played PS3 and watched Arsenal beat Portsmouth 1-0 in the FA cup final. Not sure about our new blue kit as I'm a bit of a traditionalist but I'm well happy we've signed Drogba and Lampard and have finally got Ashley Cole back.

Friday, 14 May 2010

Gavin: How *you* doin'?

I've been allowed back in the hospital after a 48hr curfew as I had a dodgy tummy. I have a feeling it could have been something to do with my diet recently which consists mainly of the food group 'brown', but you can't take any chances so I had to call Zo, jump in a cab, get home and get her back to the hospital before Sonny noticed. Typically, this happened at 2am rather than 2pm and it's great credit to my wife that she didn't get shirty. A few hours before that I was taking a sluice bottle to the sluice room which, unbeknownst to me had a tiny hole in it. I sleepily walked the whole length of the corridor before I noticed it had leaked Sonny's wee all down my pyjamas. Of course, two nurses came in just at that moment and looked at me as though I'd had the accident and I tried to laugh and explain but it just seemed to make things more complicated and I went really red and they sort of left unconvinced to find a mop and I went back to the room all apologetic. It was like an episode of Friends: The one where Gavin pisses himself.

Thursday, 13 May 2010

Gavin: Enjoy you will

Star Wars Primary from School Tech on Vimeo.

For the last couple of weeks or so, Sonny's been working really hard on a GOSH School project to create an animation. He had to write the script, make all the plasticine models and the set then film, animate and put the voice over on. I think it's absolutely brilliant and he's really proud of the effort he's put in. We watched Avatar the other night and, seeing what Sonny's managed here, I can't see what all the fuss was about.

Zoe: Political Punch

Sonny has finished his final chemo before bone marrow begins in about 2-3 weeks time. He won't be coming home until after the transplant as he needs to be here while his counts recover this time. He was allowed out for a quick bite to eat yesterday. Potentially, this could be the last time until after the transplant as he's neutropenic already and he could spike and need antibiotics at any time.

No surprise that he choose Ciao Bella. As usual it was heaving. We were seated next to a man sitting on his own with a second bottle of wine. The moment he leaned over and said good evening I knew we were in trouble... we'd got ourselves a proper bell end. Inside I was seething, couldn't he see how sensitive our situation was and just shut up? There were no other tables and we didn't have time to try and find somewhere else as we'd promised to be back on the ward by 7.30. Instead we had to sit it out listening to him brag about being a Westminster hot shot, how Ed Balls was really running the economy while Gordon was Chancellor and meeting the PM today. We are all doomed I tell ya.

He ended up making Sonny's evening though. When I requested the bill we were told that the man from the government had paid it. Sonny couldn't believe it and wished he'd ordered the lamb!

Tuesday, 11 May 2010

Zoe: Brain Freeze

Calipo Challenge: How many Calipo lollies can you eat in 15 minutes? Sonny managed three. I think it will be a long time before he enjoys another one too. Sonny had Melphalan yesterday - a pre bone marrow chemotherapy which causes severe mouth sores and ulcers. Apparently, if you freeze the mouth as it is being administered it can stop this. Hence the lolly marathon. Lets hope it works.

Monday, 10 May 2010

Gavin: Extra topping up

Bit of concern for the last couple of days as Sonny has been running a heart rate of around 160. The doctors couldn't find anything wrong so called on a cardiologist to wire him up to a big machine and get a print out to show nothing was wrong there either. The hb in his blood was 9.5 so no need for a transfusion but, considering yesterday's result was 7.9 it seemed odd that his bloods would recover during chemo. They did another test to double check and, after a couple more hours of (mild) worry, it showed a duff result - the true figure was 6.5. This meant his heart was working twice as hard to get the oxygen around his body. A blood transfusion was ordered and the pizza delivery boy turned up with it around 5pm. As I type this, his heart rate is dropping nicely so hopefully, that will be the end of it. They don't really use pizza delivery boys, but they both drive mopeds and wear red. Yeah alright... it sounded much funnier when the nurses laughed at that earlier ok.

Sunday, 9 May 2010

Gavin: An anonymous gift...

We received a package today from someone in the forces who is friends with someone we know. I know that's all a bit vague but we're not sure whether he'd want any details splashed all over the internet. However, we'd like to use this blog to say thank you.

So, thank you. It's an amazingly thoughtful and generous present and, considering you've never met us or Sonny, pretty bloody special. Two hours later and he hasn't put it down yet.

Thanks again and good luck.

Saturday, 8 May 2010

Gavin: 3 little pills

Steroids work by depressing the immune system and therefore reducing the symptoms normally associated with fighting infection such as temperatures and phlegm. As Sonny had paraflu, EBV and of course a recurrence of cancer, his body has been fighting hard for the last fortnight to try to get rid of whatever it classes as infection.
Starting steroids would help to alleviate these symptoms but can only be used if the doctors are sure his body is just trying to get rid of cancer and not another infection. This is because his own immune system can't fight the disease (which is why he's getting a new one with a bone marrow transplant) but is invaluable in the fight against other things. If used while he still has paraflu, it will continue to get worse without any symptoms and obviously lead to bigger and nastier complications.
So, to cut a very long story short, last night he was given his first dose of steroids as his blood results and infection control all show he's clear from paraflu. This morning he woke up temperature free, came off his oxygen and had a bowl of cereal. His pulse has dropped, he went for a short walk around the ward and hasn't stopped chatting. Although long term use is not an option and we do realise that steroids won't help the bigger picture, the change in him is remarkable. It helps all of us so much to see him comfortable and after the terrible time he's had lately it's a huge, huge relief just to have a smile on his face.
It's quite amazing how good the immune system is and how it can be manipulated by this incredible drug. I'll try to sneak a look at his drug chart tonight as where it says 'steroids' I'm convinced will be written 'powdered unicorn horn'.

Friday, 7 May 2010

Zoe: No pain no gain

The day didn't start well. Your stomach always drops to the floor when the doctor asks you to step outside for a minute. The staff here know Sonny really well - all his likes and dislikes are handed over twice a day and he lets people know very quickly if they've done something they shouldn't have done. The doctor needed to give Sonny some albumin today. The only problem was that he didn't have any space free on his Hickman line to get it into him. When Sonny was originally sold the concept of a Hickman line back in August the sales pitch was pretty much based on the fact he'd never need to go through the agony of another botched canula. Turns out they weren't exactly telling the truth and they knew from past injection experience he was not going to be happy. And frankly, would you be? In fairness to them, they managed to put a different, clever device into the top of his arm instead of a canula into his hand and it wasn't too bad. However, it didn't really go to plan as the new line now contained his morphine pump and whenever he pressed for some it stung like hell. I had to agree with his questioning what is the point of giving me pain when I'm trying to get rid of pain and I think I was as relieved as him when it was taken out and everything returned to normal this evening.

Thursday, 6 May 2010

Gavin: You want meat?

Last night a lovely mum thrust a plate of something under my nose and said 'you want meat? My brother he come with it from Poland'. It would have been a nice treat except it was 2.10am and I was in my pyjamas taking a bottle of wee to the sluice room. Of all the things that have happened, refusing slices of sausage in a corridor whilst saying 'oooh, it's a bit early for me love' has to rank up there as one of the more surreal. Please insert your own sausage/pyjama joke here as I'm too tired.

Wednesday, 5 May 2010

Zoe: Meeting with Destiny

Gavin and I met with the head of the Bone Marrow Transplant team today. He was very impressive. It was a long and tough meeting. I don't want to go into too much detail, it doesn't feel appropriate. We are both feeling a bit battered but are united in our belief that this decision will finally make our beautiful boy better.

Tuesday, 4 May 2010

Gavin: He shoots, he scores

OK, we have a plan. Ritoximab is going in now to kill off the EVB. From tomorrow he starts six days of chemo to put the disease hopefully into remission. After this, and as long as he's not feeling like he does now, it's home again while his blood counts recover enough to start BMT. So, at least a week and maybe two in our own beds providing he doesn't catch Lassa fever or something. Although Sonny isn't really feeling any better, at least we now know we have a protocol to follow which will hopefully have some effect on him and give him some respite from these horrid symptoms.
The lovely play specialist bought in a tiny hoop today which he spent a bit of time chucking plastic balls into until the suckers gave up and it fell off the wall. Yep, that really was as depressing as it sounds.

Zoe: The week ahead

Sonny should begin treatment today for his EBV. Its been an incredibly frustrating last few days as we are desperate for Sonny to feel a little better when actually the windows of him feeling up to conversation are getting smaller and smaller. The weight has been falling off him from 39kg to 35kg which has been a big worry as we've been trying to fatten him up for Bone Marrow but TPN (calories through his line) was finally started last night so it hopefully shouldn't drop any more. The lymph node in his abdomen was too small to sample and its too dangerous to go into his chest with his lungs being so compromised from the paraflu. Not sure what the point of this would be and whether we'd actually consent to it if we had to as Bone Marrow is where we are headed whatever the outcome. But, at least he won't have to endure another general today.

Sunday, 2 May 2010

Gavin: Call to arms


(By the way, that was a General shouting, not a caps lock issue)

Saturday, 1 May 2010

Zoe: Infectious behaviour

Sonny is in 'reds' which is hospital speak for infection. He has a sign on his door ordering everybody who enters to don a red apron, gloves and a face mask. We on the other hand have to wear masks whenever we leave his room. Sonny is not allowed to leave his room. As you can imagine its all quite tedious for everybody concerned but desperately important for everybody to take it seriously. Despite this a few stupid people who should know better still pop in and out with their hands over their mouths... Anyway, Sonny had his first negative result for para flu today. He needs 3 in a row to be out of reds so 1 down 2 to go. However, because of the bank holiday the lab is now closed until Tuesday so we get to mask the pain for a few more days yet.