Wednesday, 13 July 2011

Reality Bites …

Despite the recent good times the dark spectre of neuroblastoma looms large once more. In general I think we have succeeded in doing as much as anyone can, which is to not dwell on Adam’s illness every minute of every day. It nonetheless lurks constantly in the shadows, and right now is back to dominate our thoughts.

As we approach two years since we first discovered Adam’s abdominal tumour, he is undergoing (yet another round of) scans and bone marrow tests that will determine whether or not we can proceed to Germany. Most families have scans in Germany during the initial round of treatment, but I really didn’t want to wait that long. I also need to be sure all is well before we set foot outside the UK. If not it changes everything.

This is what living on a knife’s edge is like. In short if Adam’s disease remains stable we will start immunotherapy in Greifswald on 1st August. If the tests show progression, or new areas of disease, we will be told that Adam cannot be cured. All the testing, deliberating and planning we have done over these past three months will be for nought. We will be facing the nightmare scenario. Adam’s apparent good health is no reason for us not to fear. I am all too aware from the experience of others, many many others, what it is we are dealing with, and what it can do.

Whilst we are still engaged with NHS Surrey to persuade them to accept their responsibilities, Neuroblastoma Alliance (2Simple Trust) have already wired the money across in order that treatment should not be delayed.

Yesterday Adam underwent bone marrow tests for the eleventh time; bi-lateral aspirates and trephines. His lower back now has holes on holes on holes.  Despite knowing full well what was coming, he still bounced out of the house like a child going out to the cinema, or off to play in the park. There was no cajoling, no bribery, but most of all there was no fear. I suppose I don’t actually say it very often, at least not explicitly, but Adam’s resilience and lets-just-get-on-with-it attitude is quite amazing at times. I know he’s not unique in this regard amongst children who suffer serious illness or injury, but that doesn’t make it any less remarkable. It just highlights something most of us lose as we grow older and supposedly wiser.

Having had a last drink of water just before 9am Adam was eventually taken down for his procedure at noon. I have written before about the violent reaction Adam has to the anaesthetic, a reaction that has seemingly worsened each time. Consequently on this occasion Alison spoke in advance to the anaesthetist to see what could be done. Our own thinking focussed on the three times he’d had a vascath inserted for stem cell collection. There were no histrionics on any of those occasions. Was a different anaesthetic used? And is so, could that be used instead for the bone marrow biopsy?

Rather than use a different drug it was suggested by the anaesthetist that Adam be sedated prior to the anaesthetic being administered. The idea was he would remain asleep whilst the effects of the anaesthetic wore off, and then wake normally from the sedation.

Good in theory. In reality an enormous, disastrous, failure.

He didn’t remain asleep after being returned to the day care unit, he woke up. And boy was he pissed. On his feet, stomping around,  banging into people and things, shouting and screaming. Upset that he couldn’t remember going through the normal routine – being asleep from the sedation had actually made things worse!. Demanding to be taken back to the treatment room and given some more medicine so he could go back to sleep. Furious that Alison hadn’t taken what he wanted to eat – what he’d had on previous occasions, not what he had agreed for her to take earlier that morning. At times he had to be physically restrained by Alison and two of the nurses. I’m thankful I’m only writing about it, and wasn’t actually there to witness it all. I can safely say he won’t be having that anaesthetic again, sedation or no sedation.

By the time Adam returned home he was back in pretty good spirits again. There remained, in his eyes and face, just a few signs of the sedation, anaesthetic and emotional aftermath. He walked into our hallway hunched over like Quasimodo, but that’s merely par for the course after bone marrows. It wasn’t long before he was jumping around the lounge again, perching precariously on the arm of the sofa, and generally doing the sorts of things that seven-year-olds do. His ‘holes’ clearly weren’t giving him too much trouble this time around.

Whilst Alison and Adam were at the hospital I went up to Adam’s school for a meeting to discuss his transition from infant to junior school this September. We haven’t been concerned about Adam’s lack of schooling, not from an academic perspective anyway. At various times over the past two years he’s received ad-hoc educational support at home, but it hasn’t constituted formal home-learning as such. The infant school have given us their complete and unequivocal support in everything we have decided to do, and for that we will be eternally grateful. Now we are facing the prospect of Adam missing at least a significant portion of his first term in Year 3. We have to figure out how best to try and prevent him from falling too far behind relative to his peers. Clearly he is already behind, he’s missed the vast majority of the last two years; the question is how to stop it becoming systematically worse. Though Adam’s schooling will always come a very distant second to his health and wellbeing, we cannot simply ignore the future implications of him missing so much school. On the contrary, I hope it becomes something to concern us for many many years to come.

This morning Adam was up bright and breezy, exhibiting no lasting ill-effects from yesterday. He went off to school as usual, albeit with a warning (to which I’m sure he hasn’t given a second thought) that he is going to get hurt if he’s not careful what he gets up to at playtime.

Later this afternoon Alison will pick him up and take him back to the Royal Marsden for the first of those scans …

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