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
