Tuesday, 21 June 2011

We go to Germany ...

On Thursday evening Adam was sitting in the bath when he looked up at me and announced "I want to go into school for longer tomorrow."

"How much longer?"

"The whole day."

"Do you not think it might be little difficult for you to get up, get dressed, have your Avemar, NAC, Life Mel, wait an hour, have your breakfast, have all the rest of your pills, have your vitamin supplement, have your smoothie (a blended drink loaded with all sorts of stuff that Adam has twice daily) AND get to school by 9 o'clock?"

He paused to give this due consideration. "Ok then, I'll go in at the start of first playtime." First playtime is 10:30am.

At 7:30am the following morning Adam appeared downstairs dressed in his school uniform and clearly on a mission. At 10am he was ready to rock and roll. We would never have bet that it would turn out to be Adam waiting on his Mum to finish packing his lunch before he could go to school! He made it just as playtime started and remained for the rest of the day. He even had a friend round after school as well. It was ... almost ... normality. Normal people's normality I mean, rather than the normality to which we have become accustomed these past two years.

Monday was a staff training day at school, but this morning the process was repeated (well except that he didn't get himself dressed the minute he woke up), and he spent another enjoyable day at school. Although he did get told off today ... "and it wasn't even me that was doing it!" he told me indignantly.

On Saturday our road held a residents party. Adam spent hours on the bouncy castle and inflatable slide, up and down over and over again, along with Jake, Jessica and other children who live near us. I spent hours watching intently, waiting for the accident that (thankfully) never happened, telling him not to bounce down on his front as it wasn't a good idea when you've got a central line into your chest. There were a few bumps and a couple of upsets, but nothing too serious. Whilst we were at home having dinner they took down the inflatables, but that didn't stop Adam. He carried on playing; first it was 'it', next '40 40 home', then throw and catch, and finally football in the twilight hours. We finally dragged the kids away and put them wearily to bed at some very late hour, but they all had a great time. Adam so much so that he keeps asking us when the next one is!

Oddly enough Sunday was a lazy day. A very lazy day; aside from eating and watching television Adam did very little else.

Over the weekend I had a good talk with the professor in charge of the children's unit at the Royal Marsden. I'm pleased to report my head is now properly realigned and facing forward once more. We go to Germany.

(Just for Alison: that reminds me of the BBC1 production of Robin Hood from a few years ago. In every episode somebody would be captured by the sheriff and it would fall to Little John (in the shape of Gordon Kennedy) to rally the band of merry men to embark on yet another rescue mission. "We go to Nottingham". Cue collective tub-thumping, air punching and enthusiastic waving of bows, clubs and various other weapons of choice).

Getting back to the point; I don't doubt there'll be further doubts, because we are now completely off the beaten track. It isn't that there are no other children like Adam because there are. Actually I should caveat that. (Hint: You need to read the next bit slowly). There are other children that are how we hope Adam will turn out to be, as it remains to be seen in the fullness of time how our particular story unfolds. There are children who are 5, 10, 15+ years out from treatment who under diagnostic imaging present as stage 4 neuroblastoma. One day medical technology might catch up and find a better way of categorising them, but in the meantime they are anomalies. In the main, because these children fall outside trials and off standard protocol, they're a hitherto under-studied group. There is anecdotal evidence, but very little to be found in medical literature apart from an occasional retrospective study. Some of these children are on long-term low-dose therapy, but nobody knows whether or not that plays any part in their continued lack of disease progression. I can imagine that in the minds of parents, doing something must always be better than doing nothing, right? I daren't let myself hope (too much) that Adam is (or rather will turn out to be) one of these children. I know just how quickly and brutally this disease can destroy such hopes, and I know that for as long as both Adam and I are alive such thoughts will always be lurking in the shadows at the back of my mind.

Of the treatments we could give Adam now the one that clearly makes the most sense is retinoic acid, which he started last month. Normally it is given for 6 months following the end of treatment, but I'm very keen for Adam to continue (in the absence of intolerable side-effects) for a full year. There is a trial currently running in the UK to test children on retinoic acid to ensure they are retaining sufficient concentrations in their blood. It seems sensible to me to get Adam's levels tested, so I am trying to get him enrolled on this study even though he's already started the second cycle. If we're unable to do so I'll push to do the testing anyway outside of a trial setting. Generally speaking the biggest problem with retinoic acid levels is in younger infants who don't swallow capsules and therefore require the contents be extracted and mixed with food and drinks. The collective evidence of previous clinical trials is that the efficacy of retinoic acid is related to dosing. We know how much Adam is being given, but we don't know how much is being retained. So let's verify that he's getting to the levels that are thought to be necessary for the treatment to work.

After retinoic acid the next logical treatment is immunotherapy. He may need it, he may not. It may make all the difference, it may make no difference whatsoever. The side-effects are horrible, but generally manageable and reversible once treatment ceases. If they become too horrible, or unmanageable then we will stop.

After much consideration, I have come to realise that I have to believe - I mean really believe - that there is a chance that Adam would be 'cured' if we gave him no more treatment. How much of a chance? Not huge is my instinct, but not zero; if I tried to be more specific it would be entirely baseless. I also have to believe that if he's not 'cured' now then giving him retinoic acid might mature those remaining cells which if left will cause Adam's cancer to start growing again. And lastly I have to believe that if he's not 'cured' now, and the retinoic acid doesn't do the trick, then immunotherapy might cause Adam's own immune system to mop up whatever cells are left and thus prevent his cancer from returning.

When I say 'I have to believe' it's because that's the key to everything making sense. See how I've also conveniently avoided all mention of everything that lights up on Adam's mIBG scan. That's something I simply cannot make sense of; to think about it brings chaos to my well ordered mind.

And what does it even mean to say Adam is 'cured'. It's not a word we'll ever be able to use with certainty. Whether or not Adam is cured can never be proven, only disproven. ad infinitum. The longer he stays like he is the better the chance. Considering the long-term survival rate for children with high-risk neuroblastoma is around 30% I have to be thankful to still be able to talk about such an eventuality. If the neuroblastoma stays away or remains dormant, and Adam grows up to have a family of his own, then he probably has been cured. But it will be a long wait. And that won't be a biological family of his own by the way; that's all but impossible due to the treatments he's had. It's one of the things you sign away at the very beginning with the consent forms ...

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