Wednesday, 20 July 2011

A game of two halves ...

Adam's school leavers assembly on Tuesday was always going to be a bit emotional. Alison started getting watery eyed the minute Adam entered the room singing his year group's modified version of Take That's Greatest Day. On the whole I retained a stiff upper lip - my camera work is shaky enough at the best of times.

As we waited for things to get underway I decided to delete some older video recordings from my camera just to be absolutely sure I had enough space. The oldest was from early summer 2009, I didn't play the video but I knew from the opening frame what it was. It was the kids running around the garden in glorious sunshine. They were playing with a water sprinkler, screaming, shouting and having copious amounts of fun. (I'm pretty sure that part of it is in one of the early video compilations I did for the appeal). I couldn't help but fast forward in my mind six weeks from the date the video was shot - Adam in pain, unable to move his neck one morning, unable to walk properly the next. And then I thought of my little boy who was about to walk out in front of me with the rest of his classmates, and I cautioned myself (not that I need to) never to take anything for granted ...

The performance itself was great. We watched and we felt the same pride that every other parent, grandparent, guardian, etc. who was there watching their child felt. But, of course, there was more than that. Amazement at how well Adam had fitted back in with his friends, how comfortable he was at being there despite having missed two years of school. I suppose even a degree of wonderment that he was even there at all; there have been occasions during the past two years when in the depths of despair we would never have believed it. However, I think above all the most remarkable thing was how unremarkable it was, how normal and natural, and most satisfying of all for me was Adam's happiness at being part of it. Not just the performance itself, but the excitement that we had seen building as he learnt and practised each of the songs.

After the performance we left Adam on a high, running around like all the other kids getting their leaver's dictionaries signed by all and sundry. It had been a fantastic day, or so we thought ...

Later that afternoon, after Adam had returned home, we got a call from the school to say that one of the other children, a boy in year one, had come down with chickenpox. The school always let us know this sort of information, as chickenpox is potentially very dangerous to children like Adam whose immune systems are compromised. The chances of them developing some of the more serious side-effects are much higher. Having initially been reassured that it was just a single child in year one, Alison asked whether or not the child in question had school dinners or packed lunches. After a short while the information came back that they did in fact have packed lunches, and not only that, they sat a couple of chairs away from Adam on the same packed lunch table! Would you believe it? Of all the things, and just two days before the end of term!

Given the proximity and length of contact that Adam would have had there was no option but to let the hospital know. The response was that Adam's blood would need to be tested for the presence of varicella-zoster (VZ) antibodies (you can read more here if you're really keen). As Adam had already contracted chickenpox as a small child it was possible he was still VZ antibody-positive. However, the vast amounts of chemotherapy and radiation therapy he's had over the last two years meant that was by no means certain. During our blind acceptance phase, when we pretty much did whatever we were asked, we allowed Adam to be enrolled on a trial at the Royal Marsden to see if swine flu vaccination survived chemotherapy. It didn't. And that was without him having had either MIBG therapy, or high-dose chemotherapy.

If the VZ immunity test came back negative Adam would need a VZIG injection - basically a big needle stuck into his backside. Or possibly, given Adam's weight, two big needles. I've not seen it done so I don't have direct knowledge, but I have the definite impression that the nurses don't like administering it. I felt I had to prepare Adam with one of my great motivational speeches.

"Oh well" I told Adam "Look at it this way, you'll have experienced worse. I tell you what, I'll give you ten pounds to start off with, and then for every scream, cry and yelp you give me one pound back. Whatever you're left with you can keep."

"No Dad. You give me twenty pounds, and then every time I scream you give me another twenty pounds."

Hmmm. I was definitely struggling to see how Adam's incentivisation scheme was going to improve matters.

This morning our community nurse came to change Adam's bungs and dressings, as well as taking his weekly bloods. She also took an extra sample to test for the VZ antibody. Having been forewarned that it usually takes a little while to get the sample sent off, analysed, and reported back on, we didn't hear anything until Alison was just about to leave to pick Adam and Jess up from school. Adam's blood sample had tested positive for VZ immunity, and although it was a little on the low side there was no benefit in him receiving the injection. We were surprised to say the least.

That's not to say there is now no chance of Adam developing chickenpox. Even with the antibody his immune system is still compromised. Even if he'd had the injection it wouldn't necessarily prevent it happening either. All we can do is wait and see. And given the incubation period if he's going to come down with it then it will be literally as we are about to leave for Germany (presuming his scan and test results don't preclude that). In which case instead of starting immunotherapy in Greifswald, Adam will be getting pumped full of antibiotics up at Epsom General. Oh well, nothing we can do about it now. Except not to worry about it unless it actually happens.

Tomorrow Adam finishes school at lunchtime; it's end of term, end of the school year, and end of his time at infant school. He will have spent less days in school than he has out of school, but that's just the way it's turned out. If I had the time over I wouldn't do anything differently. After she picks him up Alison will take him to the Royal Marsden for his MIBG injection, with the scan itself scheduled for tomorrow morning. We will have the results early next week.

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