NHS Surrey Latest …

This morning I received a copy of the latest correspondence from NHS Surrey.

They’re not going to win.

We’re off …

Adam’s scan results have come back unchanged. Bone marrow aspirates and trephines clear, CT clear, mIBG remains littered with diffuse abnormal uptake. You might say it’s good news, but I still can’t bring myself to equate clear evidence of disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good.

We start immunotherapy* next Monday, 1st August. We are travelling by road so I’ve just purchased a £500 frequent traveller account with Eurotunnel that entitles us to ten bookings anytime in the next twelve months. As this will be the first cycle of antibody therapy* both Alison and I will take Adam to Germany; leaving Jake and Jessica for the second time in three years to spend the majority of their summer holiday being looked after by grandparents. Not that there’s anything wrong with that per se, and we’d be in far greater difficulty were it not for the unyielding support of our families. But it’s not how it should be, nor how it need be.

It does piss me off that we are having to travel to Germany for this treatment. Ironically as I’m typing my attention is taken away to a Cancer Research UK advert on the television – they can take a hike too. Far too much power and influence; ‘the system’ has undoubtedly let Adam down, it’s let his brother and sister down, it’s let us all down. The saddest thing of all is that he’s one of many. We’re going, despite it being a complete pain in the arse, because we’ve decided it’s the best thing to do for Adam at this moment in time. I was going to say we don’t have a choice, but technically I suppose that’s not true. Maybe I should just calm down and ask myself if I’d have the same view if we lived on the West Coast of America and had to travel to New York for treatment. And then I might stop getting delusional about what the UK is, or should aspire to be.

NHS Surrey have responded back again regarding our funding application. It doesn’t appear to be positive news, but I haven’t actually seen the letter myself yet so I don’t know any details. It doesn’t surprise. It does piss me off, but it doesn’t surprise me. I am determined to make them meet their responsibilities – we didn’t raise funds in an appeal to pay for treatment that (1) should be available in the UK by now, and (2) has been agreed in parliament should be paid for by the NHS in Germany until it’s available in the UK. I don’t care what NHS Surrey’s rulebook says, or how bad their finances are, the decision should not be based on where we live, Adam is just as much a citizen of this country as all the other children who have been to Germany and had their treatment paid for by the NHS.

In short, we’re off … and in case it’s not very clear … I’m not in a very good mood!

* antibody therapy and immunotherapy are the same treatment.

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.

Tired.com ...

Well what a weekend that was. Alison, for the first time in two whole years, buggered off and left me to it. Now, I know what you're thinking and you're absolutely right; it was incredibly inconsiderate of her. How could she leave it so long between trips away, leaving me to forget everything she's ever taught me about cooking, cleaning and general household maintenance. Of course if you ask her she'll just blame it all on Adam.

As it was on Friday evening equipped with what few instructions Alison bothered to leave me, and a not inconsiderable amount of trepidation, I drove myself and the children down to the caravan for the weekend. Freeing Alison to spend two nights of wild abandon with friends from (way back during) her university days.

The journey down was uneventful, though unpacking in the rain wasn't very pleasant. It was that fine rain, the sort that tempts you outside in the mistaken belief that it's not too bad before clinging relentlessly to you, leaving you soaked and wondering exactly how did that happen? Still at least Jake helped move the boxes out of the doorway, instead creating an obstacle course throughout the remainder of the kitchen area. It was quite late by the time we'd got everything inside; the kids were tired and pretty soon they were tucked up in bed leaving me to get organised.

The rest of the weekend was a bit of an eye opener for me if truth be told. Ordinarily Alison does most of the household chores, and most of the work looking after Adam too. I pitch in here and there with his smoothies, or pills, breakfast, supervising meal times, making tea. I had seriously underestimated how time consuming it would be doing everything myself. From the moment I got up on Saturday morning to the moment I got home the only times I sat down were meal times, toilet times, and after the kids had gone to bed. The only other thing I did was take the kids swimming late on Saturday afternoon in order to avoid the mutiny that would have ensued had I not.

We arrived home around 5.30pm on Sunday evening to find Alison refreshed and sporting a new handbag. I was knackered and sporting sore legs. Not content with two nights away Alison rounded the weekend off by taking Jake to watch the new Harry Potter movie, leaving me to do the kids teas, juicing, pills, Adam's sauna, bath and bedtime.

You'll be pleased to know that come Monday normal service has been resumed in our house and Alison is now firmly back at the helm. Apparently she's already looking forward to her next weekend away in 2021.

Two Years …

Two years. To the day. 15th July 2009. That  was the fateful day; the culmination of all those weeks and months of wondering and worrying what was wrong with Adam. I’m not dwelling on it, but at the same time it’s impossible to avoid thinking about it completely.

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 …

A proper update ...

It doesn't seem like two-and-a-half weeks since I posted an update on the eve of Adam's sports day. As it turned out the weather held, the sun shone, and a good time was had by all. It didn't escape me that I was witnessing something that I never thought I'd witness again. Not that school sports day has ever been at the forefront of my mind over these past two years, but as I watched Adam joining in with the all the other children it was impossible not to feel a bit emotional at the sight, as unremarkable as it was by any normal measure.

I think Adam has surprised everybody, ourselves included, with how well he has settled back into school. I could use any number of superlatives to describe how fantastic the school have been; the teachers, the support staff, the children, everybody. What was intended to be an hour during the afternoon almost immediately became the whole afternoon, and that in turn has now become most of the day. We settled on a routine, agreed with Adam, that he would go into school during first playtime (starts at 10:30) on Monday, Tuesday, Thursday and Friday, and after lunch on Wednesday. All subject to last minute changes and short notice cancellations; hospital visits, and his general wellbeing, must take priority of course. Despite a pretty intensive early morning schedule in terms of food and supplementation, we've still found it relatively painless getting him to school at 10:30; and when necessary because of end-of-term school trips, even earlier still. In part it's a result of us getting organised, but it's also down to Adam's cooperation. And that's entirely down to the fact that he wants to go to school. He likes going to school.

One of the most surprising aspects has been Adam's level of fitness. Each time his school day has been extended, or he's gone on an outing we've expected him to come home exhausted. And yet it's not been like that at all. Sure he has spells where he gets tired and needs a rest, but he's not superhuman! He's been through more in the past two years than most people will go through in their entire lives, we'd be insane to think it's not going to leave some lasting adverse effects. There have been occasions where someone has said to us 'I think he's a bit tired', but actually on the whole that's just Adam. If he needs a few minutes time-out he'll have one, and then he's ready to go again. He also has a certain demeanour about him when he watches television, one that lulls those who haven't been forewarned into thinking he's ready to fall asleep at any moment. In reality he just gets 'in the zone'.

In short he's had a pretty awesome last half-term including; sports day, a trip to Epsom College to see a performance of Bugsy Malone (after which he came home and watched the film on DVD), his school leavers party, and a year group day out at Chessington World of Adventures. In fact conspiracy theorists might speculate that he's deliberately gatecrashed the end of the school year just in time to enjoy all the best bits. And he's still got his leavers assembly to come. Now that will be emotional. Adam is most definitely looking forward to it given that he comes home almost every day and tells us he's done this or that in practise today. Two years ago when Jessica was doing her leaver's assembly Alison and Adam were in St George's Hospital. We knew Adam had cancer by that time, but we didn't know exactly what type, or how bad it was. I went to the assembly, along with both sets of grandparents - the best possible support for Jessica given her Mum's absence and brother's serious illness. I recorded the whole performance on video and took it back to the hospital. Just watching his reception class making their entrance and walking past the camera was enough to set Alison off. What tipped me over the edge was when this weak little voice belonging to our little boy lying prone in his hospital bed began quietly singing along to some of the songs. Alison looked one way towards to door, and I looked the other towards the window; neither wanted Adam to see us at that moment.

At the end of June I took Adam and Jess to the Post Pals summer party. The pair of them spent the entire afternoon alternating between the inflatable slide and bouncy castle, breaking only for the raffle to be held. As Adam picked out the second winning ticket I might have guessed what was about to happen ... sure enough it was one of his own numbers! Justice was almost done when he selected his prize from the table, and came back proudly holding a box of three black-and-white miniature footballs. No disrespect to whoever kindly donated the said item, but I felt compelled to tell Adam that if he'd had the benefit of being able to read he might have made a different selection. For the soap-on-a-rope he was holding so proudly in his hand at that moment would not have gone down quite so well when he actually got it home and opened it. He exchanged it for playing cards and dominoes.

We've also been going down to the caravan at weekends whenever Jake's sporting schedule has permitted. We recently bought Adam a dry suit, specially designed for children with hickman lines, to allow them to be fully immersed in water. Swimming, or at least being in water (as he has never been able to swim) is the thing that Adam has missed most. One of my early posts on here described Adam watching his sister swimming through the window of our local leisure centre and lamenting the fact that he couldn't. We kind of half promised him we'd buy him a suit so he didn't have to miss out this year, and he was very quick to remind us of this whenever we went near a swimming pool, or the sea. So now we've done it, and he's been in the pool a couple of times. You won't be too shocked to hear he's loved every minute of it. The only downside, and one that has meant we've had to curtail his long-standing desire, and new found ability, to swim, is that it aggravates his skin. Skin that has already been adversely affected by the retinoic acid he's taking. The dry suit itself does exactly what it's supposed to, although I can't pretend it's the easiest thing to put on and take off. As an added bonus, by leaving just enough trapped air inside it, the suit also acts as a flotation device, and it's enabled Adam to play in the pool with his brother and sister even though he's completely out of his depth and can't actually swim.

And there you have it, a 'proper' update. The update I started out meaning to write last time, but didn't quite manage to end up writing.