The Weekly Update ...

Wednesday again (or at least it was when I starting writing), and at the risk of becoming too predictable I figured it was time I posted another update. The short answer is that things seem to have improved since last week. How much of what was going on then was really real, and how much of it was psychological on our part? Who knows? Does it even matter? The only truth is that it always seems real, it grips you like it's real, it consumes you like its real.

Ironically the thing that put our worrying on hold was the bone marrow tests that Adam had last week. After the procedure Adam had his usual post-anaesthetic 'episode' and threatened all who came near him with extreme violence, whilst screaming at the top of his voice that he wanted to go back to sleep, and wanted some more sleepy medicine “NOW! I SAID GIVE ME SOME MORE SLEEPY MEDICINE NOW!" Pity those people sharing a bay with him. Pity Alison who had to smile sweetly through her 7-year-old son's 25 minutes of insanity. As we've both previously discovered to our cost there is absolutely no point in trying to intervene whilst it's all going off.

Alison was warned that Adam might be more sore than usual (!) as they'd had to do some digging around to find any viable bone marrow. A consequence of so much treatment in general, and the recent high-dose chemotherapy in particular. They couldn't even put the really small plasters on that Adam prefers (insists upon) because there was more blood than normal. Sure enough when he arrived home he was both much more sore, and much less mobile, than he had been when he'd left that morning. The first thing he insisted on though was replacing the hospital plasters with nice neat round ones from our medicine cupboard. His 'holes' were definitely over-sized this time round compared to previously, but despite that I was a big brave boy and helped him change the plasters. Never mind how Adam feels about having his holes, I can barely stand to look at them!

Anyway back to the main point of all this - after the bone marrow extraction Adam's movement for the next few days was more of a hunched over shuffle. There was no running, no jumping, no trying to play football ... and consequently no foot pain. And because Adam stopped complaining, we stopped asking. And because we stopped asking, we started to relax a little more. And because we started to relax a little more, we stopped looking for any tiny indication that something was not right. They say no pain, no gain; well in this instance Adam's pain was most definitely our gain. Sorry little fella. I mean middle-sized fella.

By Sunday Adam was getting back to something like his old self again; less conscious of his war wounds, back to playing football outside, bouncing on the rebounder, climbing on, and jumping off, the furniture. He's not back to where he was before high-dose, but sometimes I overlook just how tough that was on his body even though outwardly he tolerated it better than most.

He was given a platelet transfusion before the bone marrow procedure, predominantly to counter the risk of excessive bruising and bleeding in the event something went wrong and emergency action had to be taken. His post-transfusion count was the highest since high-dose, so even if he's still not making too many platelets himself he is at least managing to hold on better to those that are donated to him.

Fast forward to this week and Adam has been back at the Marsden; for a CT scan on Tuesday, and MIBG scan on Wednesday. Our appointment to discuss results with the doctors is next week. I'm not very hopeful that we will be any further forward than we were before Adam went through high-dose and transplant, but I am fearful things will be worse. Seldom hopeful, generally fearfully. It's a permanent state of being really, only more acute than ever at scan time.

Important days ahead ...

All is not entirely well in the house of Bird at the moment. On Sunday Adam began complaining of pain in the bone of his right foot, and has since been moving with a definite limp. There is nothing specific that we can relate it back to; he was quite active the previous week - out playing with Jake several afternoons - but there hasn't been an incident or a fall or anything that we could point at to give us the comfort of an innocent explanation. And so our minds naturally turn to a far darker, and far more sinister, cause. We're taken back to the time before his diagnosis when Adam went from unexplained pain, to excruciating pain, brought about by Neuroblastoma in his spine and coccyx.

And then there are other little things that in and of themselves don't seem like much, but that aren't normal. And not normal is not good. Not normal is worrisome. Adam's temperature has been elevated this week, not feverish but higher than 37.0 normal, and quite a bit higher than his usual readings. Adam's blood pressure today was significantly above what it usually is, not high enough to be of clinical concern, but high enough for us to pay attention to it. Elevated temperature and blood pressure are also symptoms that can be caused by Neuroblastoma, and Adam had both when he was diagnosed.

His bloods are still struggling to recover; platelet count is low but more stable than it had previously been, Hb has been dropping whereas before it was relatively good.

It's difficult not to bundle all these things together and end up with a bad bad feeling. Things are a little tense right now. Tomorrow Adam is at the Marsden for bone marrow tests (aspirates and trephines). Next week he is back for CT and MIBG scans. Only then will we have answers to the questions that are consuming us at this time.

An Even Quicker Update …

Short of going into banal details about what Adam’s been eating, what he’s been watching on television, and what games he’s been playing with his brother and sister, there isn’t a great deal for me to report on at the moment. We’re in a holding pattern until Adam’s scans at the end of this month. We’re doing a pretty good job of not thinking about them too much to be honest. Once we’ve received the results, and held subsequent consultations with experts both here and abroad, we know we will need to make our biggest decisions yet. We know it’s looming on the horizon and whatever we do now isn’t going to make one iota of difference. So rather than tear ourselves up with what-ifs and maybes we are just trying to get on with day-to-day life.

Adam remains well. He’s still requiring regular platelet transfusions, but his white blood cell and haemoglobin counts have both been stable for the past week. There’s nothing to be done other than wait for his platelet production to come back online, however long that takes.

On Sunday we had our first trip to the caravan that last summer provided such a wonderful release from the stresses and strains that have dominated our lives since Adam became ill. Adam himself loves it there and can’t wait to go back. It’s good for him to have something to look forward to, it’s good for all us.

This summer is going to be very different indeed. What a bastard (apologies for the language).

A Quick Update ...

Has it really been over a week since I lasted updated this thing? I guess it must have been. In truth there isn't a huge amount to report. Adam continues to be quite well - he is eating well, drinking well, sleeping well; we are gradually easing him back into his daily routines. He's still not producing his own platelets, which remains the only real problem at the moment.. Most recently he has had double transfusions (two bags of platelets each time) which has meant we have only been going back to the hospital every three days for them. Yesterday before his latest transfusion his platelet count had actually held steady overnight (from 13 to 14), but it remains to be seen if this is the first sign of some positive improvement or just a one-off. His numbers are being checked daily; weekdays the community nurse comes to us, and on Saturday and Sunday we run him up to Epsom General for a quick blood draw. It's been almost a year since we spent anything like this amount of time up at our local hospital; the nurses have all been remarking on how much Adam has grown since then!

Now that the little fellow is back home, our house is back looking like one large playroom. His 'belongings' - I can't even refer to them collectively as toys - have (once again) spread into practically every room. Whilst he was in hospital his Grandads between them decorated his bedroom (to Adam's own colour specifications), so we are just waiting for a new carpet to be fitted before he can move back in.

This afternoon we met with Adam's consultant for the first time since he completed stem cell transplant. His next set of scans are being scheduled for the end of March, to give sufficient time for all the treatment he's had to do what it's going to do.  Once we have those results we'll have a better understanding of where things are at, and what sort of discussions we need to have regarding future courses of action. In the meantime we just have to keep Adam well, build him back up as much as possible, and deal with the after-effects of high-dose which basically means flushing all that nasty toxicity out of his system.

And Again …

Adam’s check-up on Monday was the standard fair, examination by the doctor and a full blood workup. Looking good so far was the verdict – well in himself, eating and drinking at one end, disposing of waste in the normal manner at the other. Haemoglobin at 8.3, platelets at 30, so move to twice weekly bloods and an appointment is booked with Adam’s consultant for next week. Thank you very much and goodbye.

Both Alison and I shook our heads disapprovingly as she recounted this to me. Twice weekly bloods? How can that be right. When he’s having a platelet transfusion on average every two days? Oh well, no point in arguing. Better to just ignore what the doctor said and arrange our own schedule with the Community Nurses and Epsom General.

Fast forward to Wednesday and Adam’s platelets are 5 (x 10⁹ per litre of blood). The normal range is > 150, and generally they will transfuse below 10 (or if there is evidence of bleeding and bruising). So it’s back up to Epsom General this evening for Adam’s 4th platelet transfusion since last Wednesday. I think we’ll be getting his blood redone on Friday now as well. Twice weekly indeed! His haemoglobin has dropped below 8, once it reaches 7 he’ll need a blood transfusion too. And they really are boring, 3+ hours at a time. At least his white blood count is holding pretty steady - I just wish the other stuff would hurry up and do the same!