UCH - Day Three

Today was a tough day. Adam went down for his post administration scans. He was a brilliant little chap, laid completely still for the full hour and a bit of MIBG, TOMO and CT scans. Together these will give the most complete picture of Adam's disease, a full 3-dimensional image map. I hate scans. I can't imagine any NB parents that don't hate scans. It's a dichotomy of deep foreboding coupled with a need to be relaxed and settle one's child down so they will lie motionless for the requisite length of time. It never gets any easier. I've reached a point where I feel compelled to watch the image as it appears on the screen, but at the same time I really don't want to see it. And so today I sat in front of the monitor and watched various areas of his little body light up the screen without knowing for certain what I was looking at. The official report is unlikely to be available until next week.

Just before lunchtime Adam was taken off his 24-hour hydration, which now means he has more freedom to move around within his room. It took three attempts to get Adam to his scans on the 5th floor (we are on the 11th). Problems with the lifts caused long delays and 'radioactive boy' (as Adam calls himself) couldn't be left out in an uncontrolled area. Allegedly. When we got down to Nuclear Medicine they were either unaware that Adam had high-dose MIBG rather than the normal scan dose, they knew something everybody else didn't about the risk of radioactive contamination, or they just didn't care.

After a shower, change of pyjamas and clean bedclothes he was feeling quite refreshed. I even went into his room for a little game on the Nintendo Wii, albeit with the lead-lined metal screen between us. He beat me at bowling and tennis - I let him win of course.

Tomorrow we find out whether we will be allowed to take Adam out of the hospital for an hour or so over the weekend. The radiation levels in the room don't seem to be receding very quickly so we're not getting our hopes up. More drinking and more showering required. The radioactive agent is excreted in urine and through the skin.

UCH - Day Two

Adam spent the morning in the ward playroom playing the PS3 and doing arts and crafts. At midday we returned to Room 2 so the nurse could put up his pre-hydration. Around 2:30 four people in white coats came up to the ward to administer Adam's MIBG infusion. Around 20 minutes later it was all done. The white coats packed up their equipment and trundled back up the corridor from whence they came. The door to Adam's room slid gently across until it was fully closed and he settled down for a week or more of solitary confinement.

Each hour we take a 60 second reading of the radioactivity coming from Adam, and it's this reading that will determine when he can leave the room, when he can leave the hospital for some outside air (I hesitate to call it 'fresh' - this is Central London), and when he can come home again. On entering the room Alison and I must don plastic apron, gloves and overshoes. We also take in a counter that measures the radiation levels to which we are exposed whilst in the room. On leaving we remove the protective items and place them in the yellow bin, close the protective door, and note down the time that we entered the room, and the counter reading on entry and exit. That's how it will be for the next 7 days or so.

Tomorrow Adam will undergo scans. 

UCH - Day One

As I write this I am sat in rented accommodation in the West End of London. Adam is spending his first night on the 11th floor of University College Hospital. Alison is there also, in an adjoining alcove with a pull curtain. I can't describe it as a room. Jake and Jessica are back in Epsom being looked after by grandparents.

Tomorrow Adam's treatment begins. Except for the isolation we are not expecting it to be too much of an ordeal. Will it do any good? Only time will tell. We hope so. With every fiber of our bodies, we hope so.

The best laid plans and all that...

Ask any parent of a child with Neuroblastoma and they'll tell you the same thing. Plan at your peril. Of course I already knew this myself as Adam has been battling this disease for 14 months now. Whilst we are still a long way off veteran status we have been in this particular boat long enough to understand it's path is neither predictable nor steady.

At the moment we are supposed to be into day 4 of our first week at UCH. We're not. We're still at home. The hospital called us on Monday to apologetically inform us that Adam would not be able to be admitted the following day as they were unable to organise sufficient levels of nursing cover for the weekend period. They assured us that everything would definitely be fine for Adam's treatment to take place next week instead. I wasn't very pleased, but what could I do? Shoot the messenger, or in this particular case the radiographer who drew the short straw and phoned to let us know?

Unfortunately we'd planned. My parents had travelled down from Norfolk to look after the kids for the week. They arrived a couple of hours before we got the phone call from UCH. I'd booked a serviced apartment off Regent's Park for a week so we would have a base near the hospital from which to prepare fresh food and drink for Adam, and somewhere for me to sleep. After surgery he lost 3 kilos in weight and it showed. Not having any idea of what the catering facilities at UCH were like, and given that the parent facilities consisted of a microwave oven, we decided that getting an apartment nearby was the best option. I'm sure I don't need to tell you what the cancellation policy was one day before arrival.

We'd also started to make plans for the following weeks too; when Adam would be away with Alison, then back at UCH, and then at the Marsden for high-dose. Everything would now be shifted by a week. I had another apartment lined up for the second round of MIBG therapy, but fortunately that booking hadn't yet been confirmed and no money had changed hands.

The date of Adam's treatment at UCH isn't the only thing that's changed since my last post. The whole treatment schedule has been re-evaluated by his doctors. The fact is that Adam is at the boundary of what medicine has to offer, certainly in the UK. High-dose and transplant is an important part of 'consolidation' when there is little or no evidence of disease left. It's not designed for clearing a large disease burden, which is what Adam still carries despite all the chemo he's had pumped into his body. If he were to be put through high-dose in his current condition my view, until I am convinced otherwise, is that it would be because there is nothing else left, not because there is any genuine expectation that it might succeed where all else before it has failed. Knowing what high-dose entails, and what risks are associated with it, I couldn't be any less sure about it. To the point where I can actually seeing us saying no. It's an incredibly scary prospect.

Then there is the problem of stem cells. As we failed to get an abundant supply there needs to be very careful consideration regarding treatments that are highly suppressive of bone marrow function. High-dose MIBG therapy and high-dose chemotherapy both require stem cell transplant. Giving back insufficient stem cells can lengthen the time that it takes for the bone marrow to recover and start working again. During this period, which may extend to many months, Adam would require transfusions of blood and platelets, and could not undergo any other type of treatment which was blood count dependent.

So the new schedule is for Adam to undergo a single course of MIBG therapy and then evaluate his response.. The hope would be to find evidence that Adam is responding to MIBG and therefore be more confident that going through with the second dose is the best course of action. The twin MIBG treatments would then certainly require some of Adam's stem cells to be returned to him. The complication with this approach is that there is plenty of evidence of children seemingly not responding to MIBG, only to discover a delayed response some weeks and even months later.

So nothing is clear. Which is par for the course I guess with Adam. My own view? Sadly I hold very little hope, and zero expectation, that MIBG will succeed where all the chemotherapy that has gone before it has failed. It's not our destiny for things to go to plan. That's not a defeatist attitude. I honestly believe that eventually Adam will beat this thing. There I've said it now, I'm not sure I have before.

In terms of his general well being Adam is doing great. In many ways not going into UCH this week has given his body that little bit extra time to recover at home, in an environment that we're all familiar with. It is just 23 days since his operation but his eating, general demeanour and range of movement are pretty much back to what they were before surgery. A few days ago he suddenly began running again, and followed this up with a night-time bicycle ride 'to test the lights out on his bike.'

As time goes on we're looking at more and more ways that we can help to make Adam as strong as possible through nutrition, environment, supplementation, detox, and alternative therapies. I've bought a Far Infra-red Sauna, a water ionizer, air ionizer, air sterilizers for his bedroom and around the house. We've imported a RIFE machine from abroad. We're having a complete blood, urine and stool analysis done that will show us any metabolic imbalances, nutritional deficiencies, parasitic infections, yeast infections, digestion, absorption, gut flora. I'm not stupid and I've not gone nuts; none of this may be directly relevant to curing Adam's cancer, but it can do a great deal towards making his body function in the most effective and efficient way possible. Is there anybody that doesn't think that's a good thing? We're also seriously thinking about alternative treatments that are not available in the UK, on the NHS or otherwise. And it feels like the time is fast approaching when we need to start looking seriously at trials outside the UK for which Adam might be eligible. He no longer makes a good guinea pig in this country because his response to upfront therapy has been very different to the norm, but somewhere there might be an experiment to which he's well suited.

And so it begins...

It doesn't matter that I've prepared myself for the best part of the last twelve months for what is about to occur. It doesn't matter that I've written about it countless times. It doesn't matter that I am fully aware that this is something we need to do in order to give Adam the best chance of living a normal life again. Or that at times I've doubted we'd ever get to this point so just to be here and the fact that we're still fighting means something in itself. It doesn't matter. I'm still deeply scared. Anxious doesn't nearly cover it. There are so may what ifs and maybes. So many risks, Risks of serious complications, some of them life-threatening in themselves. Liver failure, heart damage, kidney damage, hearing loss, serious infections. And at the end of it we may be no further forward than we are now. In fact we may find ourselves coming out of the other side  in a worse position - the damage done to Adam's body will leave him weak and vulnerable - and not improbably with widespread disease still. Rightly or wrongly it feels to me like this is the final throw of the dice.

Tomorrow (Friday) and next Monday Adam is going for a hearing test, kidney function test, echo cardiogram, and a dental check-up. On Tuesday he's admitted to UCH in London and Wednesday he starts MIBG therapy. One week confined to the lead lined room with minimal outside contact. Then one week at home. Or rather somewhere that Jake and Jessica are not. There is a danger from the effects of secondary radiation, particularly in Adam's excretions, so for that week we have to live apart though we're not exactly sure what the living arrangements will be yet. Then it's back to UCH for another week of MIBG therapy in isolation.

That's the easy part.

On Oct 13th we transfer straight from UCH to Royal Marsden for High-Dose Chemotherapy with stem cell transplant. That usually means a 2-3 month in-patient stay. The reason for the back-to-back is so that there is only a single transplant involved. We were warned about things snowballing but now it's happening it so feels like everything is starting to unravel and what little control we may have had is being wrested from our grasp. He hasn't recovered properly from surgery yet and has lost a lot of the weight that had taken so long for him to put on. Gone in a fortnight. And soon all that hair that has slowly grown back will be gone too. Not gradually this time, but practically overnight.

There's just so much to think about. To be apprehensive about. Scared about.

We'll see you again in January. Or maybe late December if we're lucky.

Post-surgery...

We've had a mixed time of it post-surgery. If ever there was a case of two steps forward and one step back this was it. Although at times it's seemed more like one forward and two back. We got Adam home on the Sunday after surgery, just 4 days after the operation to remove his tumour. Monday and Tuesday morning continued to see an improvement in him, but then in the afternoon and through into Wednesday he just grew more lethargic and tired, refused food, drank very little and generally regressed back to being a very poorly boy.

Having taken him to hospital to have him checked out his demeanour then improved and we made a late decision to get away for the weekend. He gained a spring in his step, spent more time walking and exercising, his appetite started to return and we thought we were back on the right road. And then Tuesday happened.

Having had a good night's sleep he woke up and went into Jake's room (as per his usual routine). We then heard Jake shouting downstairs "Adam's being sick". And so he was. Head stuck down the toilet vomiting what looked like a mixture of bile and green phlegm (I'm sure you're thanking me for sharing these finer details with you). Hoping it was just a result of a build up of said phlegm during his sleep I proceeded to continue with Adam's daily routine which involves a glass of wheatgerm extract first thing in the morning taken on an empty stomach. I have never witnessed anything like it before in my life. He drank the contents no problem, but literally as soon as it hit his stomach it made a complete about turn and came straight back up again. It was like wheatgerm yo-yo. Down... and up. All of it. In one continuous motion.

All of the progress made over the weekend undone (again). No eating, very little drinking, the odd vomit. So frustrating and quite difficult to deal with. From being a healthy (looking) little boy pre-surgery Adam is now stick thin once more, all skin and bones and looking anything but healthy. He's lost several kilos in weight and it takes a conscious effort not to become disheartened by it. 'We've put all the weight back on before and we can put it all back on again this time round' I keep telling myself. But I know that's not going to happen anytime soon for next up is MIBG therapy and the dreaded high-dose chemotherapy and stem cell transplant. There'll be no long-term weight gain until this phase of Adam's treatment is well and truly over that's for sure.

Summer's Gone...

It may be an odd statement for a parent of a child with Cancer but we had lots of fun over the summer holidays. Much of it brought on by the kindness of a friend in giving us the use of their house near the coast, and some of it as an indirect result of Jake's broken arm. For it was the combination of these two things that ended up with us buying a caravan, which we would otherwise have never thought of doing. We spent many happy days down by the sea, firstly at our friends house and then several weekends at the caravan. I'm sure the kids had a summer as good as most.

But that's gone now. Largely forgotten. There can be no dwelling on such things. No time, and often no capacity, to reminisce or look fondly back on the holidays. It is the same with everything. We live in the here and now, constantly and only looking forward whether it be with trepidation or anticipation.. We have good and bad moments, but once they are over they are as good as lost. We worried about Adam's surgery, and then it went well. No time to dwell. It wasn't a victory it was a necessary evil. Now we worry about his lack of eating and difficulty moving around. Hopefully it will be soon rectified, and then we will focus on and worry about MIBG therapy. This world we inhabit is relentless and energy sapping.

Jake started secondary school this week. I took the obligatory photos and one day I may look back on them differently. But honestly, for the here and now it's not that important for me. In many households I am sure the end of summer holidays and kids going back to school, and especially off to a new school, was a big deal. It would've been in our house too in years gone by. But it has taken a conscious effort on our part for it not to be inconsequential this time, and although that's not really fair on Jake it could be no other way. The significance of everything else is diminished by the 'C' word.  The 'C' word is king. The 'C' word trumps all. My abiding memory of Jake starting secondary school? Wondering whether I will ever see the day when his brother treads the same path. That is what the 'C' word does.

Surgery...

I feel conflicting emotions as I look at Adam sitting forlornly in the chair watching Avatar (the cartoon series not the film with the 10ft tall blue geezers). On one hand we've passed a major milestone on the road to wellness, one that we knew from the very onset last July that we'd have to go through. On the other hand the carefree little boy who was conducting running races and throwing stones into the sea just 5 days ago is now barely able to move without pain ripping through him. The incision wound stretches from one side of his belly right across to the other. There is nothing pretty about it and Adam has in the main insisted on keeping it hidden beneath surgical gauze. I'm not sure what Jessica will make of it when she sees it. Jake will almost certain recoil and never want to see it again. Strangely just before I left the hospital this evening I asked Adam if I could take a photo of him waving and send it to Jake & Jess so they can see how he's progressing. "Take a picture of this" was his response and he removed the gauze and exposed his wound in all it's glory. I'll show you the photo later on, but I didn't send it to Jake. Showing him and explaining is one thing but an unsolicited picture message is something else.

Along with the conflicting emotions I can't help but also feel a sense of guilt about what is Adam is going through right now. He never asked for this to happen, in many respects he wasn't even a willing participant. We told him that he was going to have some of the special medicine to put him to sleep and the doctor (we don't do the subtleties of doctors/consultants/surgeons and all the vagaries in between with our 6-year-old son) was going to make a cut in his belly and take out the lump that used to give him his tummy ache. However, that hardly prepared him for what he found on waking up in the intensive care unit with various tubes coming out of hands, arms, nose and, most uncomfortably of all, his 'winkie'. Of course, nothing could have prepared him, not without frightening him so badly that we'd have needed to sedate him just to get him to the hospital. As it was he donned the surgical gown and announced defiantly 'Come on, let's get it over with' before running (literally) down the corridor and into the preparation room next to the operating theatre. He even put the monitoring pads on himself. So to see him in pain. finding difficulty making even the simplest of movements, and croaking like an old man with a lifetime of smoking behind him leaves me feeling guilty that I was responsible for this, for the transformation from the Adam of a week ago to the Adam of today.

But of course I know this is a temporary state, and a necessary one for us to achieve our ultimate objective of getting Adam back to full health and cancer free. I've wondered (completely pointlessly) what things would've been like had we reached this stage when we were supposed to. For initial responders surgery follows rapid cojec induction therapy and stem cell harvest. So our consultant has been writing to the surgeon at St George's since last summer. On the original plan he should have been have his tumour removed last September or October. I think things would've been very different had it worked out that way. The upfront chemotherapy schedule is so intensive that everything is just a blur; you are caught up in a whirlwind of 3 days of in-patient stays every 10 days. Adam is without doubt a lot stronger now than he was back then, but at the same time the effects of any treatment that knocks him back are all the more pronounced precisely because of this fact.

Anyway that's enough of these musings. Let's stick to the facts for a while.

Last week we spent Monday to Friday at the Advance Institute for the Scotson Technique at East Grinstead (http://www.scotsontechnique.com). Each morning Adam underwent a 90 minute session of Hyperbaric Oxygen Therapy (HBOT). This involved sitting in a pressurised chamber wearing a sealed hood into which 100% pure oxygen is piped. It takes 15 minutes to reach the simulated depth, 60 minutes breathing the oxygen at that depth, and then 15 minutes to ascend back up again. The whole thing is painless, if somewhat dull. We played Yahtzee and card games to pass the time away. Only once did Adam feel any discomfort when on Wednesday he got a built up of pressure in his ear whilst descending. However, all they did was pause whilst the pressure in his ear equalised and then before continuing further. In the afternoon we learnt some of the basic breathing exercises that Linda Scotson has developed to help improve the effectiveness and efficiency of the respiratory function. This enable the maximum amount of oxygen to be pumped round the body. We also covered some other items like diet, pH balance, electromagnetic stress and more. The centre is most commonly used by parents of children with neurologically based conditions such as Cerebral Palsy, Downs Syndrome, Epilepsy. We met other families who had travelled from the North of England, from the Midlands and even across the channel from France to seek help and advice. The atmosphere there was incredibly friendly and full of positive energy. I have little doubt we will return in the not too distant future.

Over the weekend the five of us went down to the caravan and had a relaxing bank holiday weekend. The weather, that for the preceding week had been awful, suddenly brightened up and we got out and about, did some walking, went down to the beach, played some pitch-and-putt golf. Adam was as full of energy as we could recall seeing him since he became ill. As Alison asked at one point after we had been out for the third time that day; "I don't know if it was the Oxygen therapy or just coincidental but we haven't once thought to take the pushchair out just in case Adam starts to get tired and needs a rest."

On Monday we awoke to the sound of Jessica, big mouth Jessica, telling Adam that he was going to St George's on Tuesday. As I got up and entered their bedroom he demanded to know why he was going there, which is when I explained (sort of, up to a point) what was going to be happening this week.

As well as Adam being admitted to St Georges for his pre-op assessments, Jake was also in hospital on Tuesday morning to have the cast off his arm. I'm happy to report that his arm has healed very well. Unfortunately due to the severity of and positioning of the break he's been told he cannot participate in any sporting activities, not even PE at school, for another 6 to 8 weeks. Next consultation is in 4 weeks time.

Adam was declared fit for surgery, as we knew he would be, and I was up early on Wednesday morning to get to the hospital for 7:30. He'd been nil-by-mouth since the previous evening and the first hour after I arrived was just questionnaires and form filling, name-band fitting, meeting the anaesthetist, that kind of stuff. And then the real business began. The nurse took us down the Lanesborough 3, which is where the surgery took place. There we met the lead surgeon who told us the scans looked good and he felt confident about removing Adam's tumour. At the same time, however, there were no certainties until he was on the table and they could see exactly what was going on. We had the warnings that this type of surgery was necessarily slow and complicated and would take as long as it took. Adam was their only patient today and it was possible that it could literally take all day. If everything was done and dusted by lunchtime that was a bonus, but it wasn't very likely.

At this point I was quite calm and collected, as was Alison I think. Adam was in very good shape going into surgery, probably as well as he could be (as the surgeon himself said to a rather jovial pre-surgery Adam "You're supposed to be ill"). Nothing we'd heard about in any of his scans had indicated that this was anything other than a very standard presentation. And Adam was in the hands of one of the leading surgeons in the UK for dealing with Neuroblastoma. The anaesthetist gave Adam a shot of the now familiar white medicine and he almost instantly started to snore. I kissed him gently on the forehead and told him I'd see him later. You can tell how calm I was as even now I didn't get too emotional. It's worth remembering that some 13 months before, back in July 2009, we'd been through something very similar (to this point at least) when we took Adam down for his biopsy and hickman line insertion. This experience this time was definitely less traumatic for me.

My mindset on leaving the operating theatres and walking down the corridor was that we'd hear nothing until lunchtime at least. But of course the mind wanders and different scenarios play out in your head as time ticks by. The surgery will be over really quickly; Adam's tumour will practically drop out, everything will be fine and we'll unexpectedly get a call in a couple of hours to day it's all over and we can go down to recovery to see him. There will be complications and they will be unable to take the tumour out. They will find something unexpected such as his kidney being affected and the surgery will need to be much more invasive and damaging. And of course there are other, even more serious and sinister, scenarios that unwittingly enter into your consciousness too.

We hadn't given any thought at all to the practical issue of what to do in order to try and pass the time whilst we waited for news. So, almost by default, we bought some newspapers and magazines and headed to the restaurant for breakfast.

I had breakfast.

I read The Times.

I read The Guardian.

I read What Hi-fi and Video.

I (even) read The Radio Times.

As 1:30 approached we decided it was time for lunch. It was only after that when I started to be dominated by thoughts of how things were progressing with Adam's surgery, and those mind wandering scenarios began to worry me more and more. I suppose partly because it was clear by now that Adam's surgery wasn't going to be the bonus finished-by-lunchtime type.

Having tried sitting calmly and quietly in one of the waiting room chairs I eventually felt the need to get up and do something. I told Alison I was going for some fresh air and then decided I would go for walk the perimeter of the hospital. Now those of you that know St George's hospital will know that it's a big place and I can testify to the fact that it takes quite a long time to walk right round the outside of it. Of course I was half-way round, and in the middle of I knew not where when Alison took a call to say the surgeon wanted to speak to us up on the ward. I knew I was in trouble when I took the phone out of my pocket and saw 4 missed calls and 1 text message.

Now we hadn't actually been told that after surgery we'd be spoken to up on the ward. We actually thought (and I am pretty sure we were told this, it wasn't just because that's what happened last time) that we would be called after surgery to go down to the recovery room to see Adam. I don't think it matters how logical you are, and I was very logical, but there was still a bit of me that was a little panicked as I made my way back up to the ward. In the event we were met at the nurses station by the surgical registrar whose first words on seeing us were 'He's fine. The surgery went well'. I'm sure the relief must have been written across both our faces.

A more complete conversation followed with the lead surgeon. They had achieved a complete resection of Adam's tumour. This was indeed the news we had wanted to hear. Other than the main mass they couldn't see any evidence of further tumours or damage to the kidney, adrenal gland or sympathetic chain (part of the sympathetic nervous system). After talking with the radiographer at The Royal Marsden they mobilised Adam's kidney (moved it forward and folded it over) and checked behind. Despite everything appearing to be completely clean it was concluded that the safest action was to remove the left adrenal gland and left sympathetic chain. These are commonly where the Neuroblastoma originates and the loss of them is relatively inconsequential.

A little while later we made the walk to PICU (Paediatric Intensive Care Unit) where Adam was being looked after. Typical us, the PICU at St George's is currently being refurbished and they have temporarily decamped inside the Cardiothorasic Intensive Care Unit which is a good ten minute walk through the hospital corridors. And, somewhat annoyingly, has no facilities for parents to sleep close to their children. It's not the lack of parental beds that is annoying so much as the fact that nobody informed us of the temporary relocation. So we were completely unprepared. Still, I've learnt to be annoyingly steadfast where Adam is concerned so we reached an acceptable compromise and Alison was given a Z bed in a room just a few hundred yards away.

Nothing can really prepare you for seeing your child immediately after major surgery. There wasn't any blood or anything like that, but his little body still looked beaten up. He had a nasogastric tube to collect the green bile that builds up in the stomach, two arterial lines (inside of the wrist) and a line into the back of his hand for blood, antibiotics and paracetamol, one of the lines on his Hickman for both morphine and fluids, the other connected to the CVP monitor. That's central venous pressure for those that don't know. He had three monitors across his chest for blood pressure and heart rate. His thumb was connected to monitor pulse and oxygen levels in his blood (SpO2). And he had a catheter collecting his urine. I don't think I've missed anything out. The surgeon showed us the incision wound and I forced myself to take a look. I don't do blood and wounds and 'proper' hospital stuff really. I never could stand to watch Casualty. But it when it comes to my little boy I have to be a big brave Daddy. Kind of.

For the first 24 hours or so after surgery Adam spent most of his time asleep. During Thursday he began to take bits of water from a sponge on his tongue. Later in the afternoon they disconnected some of his monitors and lines and it seemed like we were taking the first steps on the road to recovery. By early evening we were out of ICU and back on to the ward.

It's now 24 hours since I started to write this post. In that time Adam has made excellent progress. He is now eating and drinking. He has had three poos, which means his bowels are fully woken up and back to normal (and thus I can stop posting on Facebook and Twitter every time the poor chap takes a dump now). He is no longer on fluids or morphine or antibiotics. In fact the only thing he is taking is oral paracetamol, and the only items of any concern are a slightly raised temperature and a low potassium level. The first we hope is just a result of the internal trauma and healing process and the second we hope will rectify itself now he has begun eating.

So 72 hours after major surgery and Adam is doing very well indeed. We need to build up his eating, and work on his mobility. At the moment he can shuffle around and moves gingerly from bed to chair and chair to bed, but that's it. Tomorrow we will get him walking. Or try to. For Adam generally doesn't do anything unless he is ready, and unless he's in control. That doesn't mean we can't nag a little however. It's like the power of suggestion. He'll only do it when he's ready and willing, but if you don't suggest it chances are he won't do it at all.

Wed 1st Sept - Pre- and Post- surgery

Thurs 2nd Sept - Post-surgery in ICU

Friday 3rd Sept - Back on children's surgical ward

Sat 4th Sept