Friday, 4 November 2011

Five Beautiful Little Words ...

"Stable disease, no new lesions."

I may not become paralysed with fear at scan time, but that doesn't mean I'm not acutely aware of what’s at stake. I don't discuss it much, nor drive myself insane speculating on what the outcome might be, but it’s always there looming. Imagine you’re standing on a ledge staring down into the abyss below, a silent hand resting on your shoulder. In an instant that hand can either push you in, or pull you back again. For me that’s what waiting for scan results is like. In some peculiar way it’s actually ok to be standing out there on the ledge. I could stand there forever if it means never being pushed in. Part of me wants to know the results, but part of me is happy not to know the results. The logical part of me knows sooner or later I’m going to get the results. Until then I’m somehow content to be out there on that ledge.

I know - I'm a crazy man.

The scan was on Friday, so I wasn't expecting to hear anything before the weekend. For most of the time we've been patients at the Marsden they have simply done planar MIBG scans i.e. front and back. More recently, however, they will do planar first and then a SPECT if they feel it's necessary. SPECT takes pictures at regular intervals through a full 360 degrees, and then computerised tomography generates a series of 3-D images. These images provide depth that is missing from basic anterior and posterior images, and so they tend to use it (at the Marsden at least) if there appears to be evidence of soft-tissue disease.

Adam had planar scans, and then the technician scuttled off to see whether there were any problems with the images, and whether they needed to do SPECT imaging. There wasn't. And they didn't.

Over the weekend we took to the caravan for the last time this year. The park closes between November and March, so there's a fair bit of sorting out that needs doing to close up for winter. With travelling back-and-forth to Germany taking up three weekends in every five we've not been there anything like as much as we did last year; but there'll be other years. Adam had a busy day on Saturday, outside playing hide-and-seek and football during the afternoon, then walking down to the centre for a Halloween party in the evening. Whilst Alison and I had a drink at the bar, Jessica and Adam spent a good hour outside in near darkness in the outdoor play area, amusing themselves on the climbing frame and slides like the semi-abandoned children they were.

On Sunday Adam ached. A lot. All over. His legs, his back, his neck. For the first week that we're back, when he is still connected to the portable antibody pump until Thursday, Adam doesn't go back to school at all. So for three weeks he'd led quite a sedentary lifestyle. Going from that to full-on, all afternoon and evening, mayhem it was little wonder that he paid for it on Sunday. A couple of days into this week and most of the aches and pains had subsided, except for the sides of his legs just above his ankles. Adam decided the Vitamin E cream he uses on his face whilst on retinoic acid would also be good for aching legs, so he's taken to applying it there as well. It can be difficult at times not to get unduly concerned whenever there is an ache or a pain, even if there is a perfectly obvious explanation; it's the nature of the situation we're in. It always gives me a little added comfort when he has aches in both legs, as a symetrically matching pair is even less likely to be disease-related.

Halloween itself passed us by this year, we were simply too consumed by other things to find time for the whole pumpkin, dress-up, trick-or-treat thing. Kids didn't seem to mind, even Adam didn't make a fuss beyond asking the once whether he could go out. In any case we don't let the children eat surgery sweets or chocolate; except for health foods masquerading as sweets, and 70% dark chocolate.

I tried calling Adam's consultant on Monday to see if there were any results on the system yet. You see, despite being content to be out on that ledge, I also know I need to know because only then can we plan accordingly. We've made plans for travelling through the harsh winter in Germany, for spending Christmas as a family out in Greifswald, whilst at the same time knowing full well that bad news from these scans means none of that would be happening. Instead we'd be seeking out a new plan of action, one almost certainly involving early phase clinical trials in North America. Our consultant was at St George's when I called, so I sent an email instead, asking that she call me when the results were available. During the afternoon I received a reply back saying that yes she would.

Tuesday came and went without any call, and without any email.

Late on Wednesday morning I tried calling once more. Again I was told she was at St Georges, but I knew that this was clinic day at the Marsden (we've had plenty of Wednesday afternoon clinic appointments ourselves there in the past two years). So I asked for a message to be left on her desk for when she returned. I was so sure I'd get a call Wednesday afternoon, probably late on after the end of the scheduled appointments. I even took to carrying my mobile phone around everywhere with me, which I never normally do. It even went back-and-forth with me to the toilet.

Wednesday afternoon came and went without any call, and without any email.

By Thursday afternoon I was beginning to wonder what was going on. We have to take copies of the scans back to Germany with us, but I didn't want to request copies from the person responsible for that until after I knew the results. Don't ask me why, I just didn't. To be honest if the scan was bad I wasn't really wanting to go back to Germany at all … which is why I had asked to have it over here in the first place.

A few hours later Adam's consultant called me to say his scans were down to be looked at in Thursday's MDTB or Multi-disciplinary Tumour Board, where specialists from different areas get together as a group to discuss patients. The official report from Nuclear Medicine interpreted Adam's MIBG scan as Stable disease, no new lesions. Possible minor improvement in the femoral region. Stable disease, no new lesions. Five little words, five beautiful little words, that I will never ever get too used to hearing. The silent hand pulled me back from the ledge once more, and our plans for the remaining two cycles in Germany could continue in earnest. I remain skeptical about the 'possible minor improvement' simply because Adam's uptake is diffuse and widespread. It must be very difficult indeed to discern whether or not it's slightly sparser, slightly less bright, than it was before. Indeed one of the concerns I had whilst awaiting the results was whether Adam's inability to stay completely still during the scan might falsely give rise to the appearance of more dense uptake.

Of course, we still have an MRI scan, and bone marrow tests, to negotiate once we are back out in Germany, but we can be reasonably (though not entirely) confident that the outcome of those will not show up anything vastly contradictory. In certain cases, neuroblastoma can either present as, or become, non-MIBG avid; nobody knows why this is so. In such instances an MIBG scan, the gold standard in neuroblastoma imaging, actually gives a lie to what is really going on inside the body. I would have been more concerned about such a possibly had Adam's scan showed marked improvement compared to previous, but the MRI scan will tell us for definite that there isn't something else going on that we don't know about. Having an MRI in Germany means not exposing Adam to the radiation that comes with a CT scan, as routinely used in the U.K. There is a specific reason why I wanted bone marrow tests undertaken in Germany too. Bilateral aspirates and trephines have repeatedly been clear for over a year now, and yet the highest concentration of MIBG uptake is in Adam's right pelvic area. Two things that to me seem almost incompatible with each other. The Marsden do a number of immunological tests over-and-above standard protocol (NB84a, NSE and Neurofilament for those interested), all of which have been negative. However, as part of the German immunotherapy study, bone marrow samples are sent to a lab in Cologne where they undergo immunohistochemistry using a GD2 antigen that is able to detect sub-microscopic levels of neuroblastoma. Which is why I was happy to do bone marrow in Germany this time, rather than back home at the Marsden.

Adam has been back at school this week, part-time. He loves being back amongst his friends. It never ceases to amaze me how they welcome him back into the fold each time after his three-week absence, and they all pick up where they left off. Being in junior school now, Adam's uniform includes a proper shirt and tie. However, Adam hates having anything tight round his neck that impacts on his biopsy scar where his lymph node was removed. Similarly due to his Hickman line he only ever wears shirts loose, and never tucked in. Before he started, Alison wrote a note to the school politely requesting them not to ask Adam to do his top button up, or tuck his shirt in. They haven't, and we've never had any problems. This week, however, Adam has been a little more highly strung than usual, a little more sensitive, so it made me wonder how he would react if he ever were told to smarten himself up. So whilst getting dressed on Tuesday I asked him what he would say if one of the teachers shouted at him across the playground "Boy, do your shirt up and tighten that tie of yours!". He replied, quite matter-of-factly, I'd say "Sorry, I have cancer." Fair enough son, I told him, that's probably good enough to stop most people in their tracks!

Yesterday I got a call from Alison to say 'we've now got a proper little schoolboy'; those were her exact words. At the end of lunch break, during a (no doubt frenetic) game of cops-and-robbers Adam had clashed heads with another little boy and got himself a very bruised cheekbone and eye socket. His first ever real shiner. He was clearly very upset when I spoke to him on the phone, all timid and tearful. He told his Mum that he came off worst because he was taller than the other boy, and that at least it happened right at the END of playtime. By the time I got home from work he was back to his normal self again, albeit sporting a new Rocky-esque look. He's still gone off to school this morning intent on another game of cops-and-robbers. He's decided he'll be alright if he's a robber, as yesterday was the only day he was a cop - and look what happened. He may be fast approaching his eighth birthday, and he may already have been through more than most of us ever will, but he's still, first and foremost, a child at heart ...

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