OK-that wasn't too bad

OK - hospital visit went pretty well all told.  Luke has pretty much maintained his weight at the 2nd percentile - he is eight and half months old, and just under 7kg.  That means that 98% of boys his age weigh more than him.  He was tracking along at about the 9th percentile before becoming ill, and dropped to below the 0.4th, so being back at around the 2nd for a few weeks now is progress.

The cannula went in nice and easy, getting plenty of blood out to test, and getting the chemo drug delivered easily.  Doctor was happy with all of the physical checks, if a little keen for us to try and stop the morphine.  We will, but probably not until Luke is back in hospital next week, as each time we are a bit late in giving it to him, we end up with what looks to us very much like a baby in pain, and out of everything we are dealing with, seeing Luke in pain is the most unbearable thing.  So, the morphine stays for now.

The blood test showed pretty much what was expected.  No viruses/bacteria to worry about, and low counts of certain elements.  Luke is neutropenic at the moment, which is as expected.  The doctor is concerned that if his blood counts don't increase to the right level before Monday, Luke may not be able to have the hickman put back in quite yet - but they do expect white blood cells etc to return to normal by then.  We need to have a blood test at our local hospital on Friday to see how things stand.  Our concern is that for some elements of the blood they can do a transfusion to boost Luke's system and get it up to the right levels.  But for other elements they either can't, or don't seem willing to (I think it is 'can't', but wasn't entirely focussed at that point in the conversation as Luke needed distracting).  If they can't do the hickman line operation on Monday for some reason, then it may delay round two of the chemo, as he currently doesn't have anything robust enough for them to deliver it through.  BUT, as I said, the doctor expects everything to return to normal by then, it's just a precautionary check on Friday.

I managed to get myself quite upset this afternoon over something I thought I was ready for.  Sitting in the treatment room at the hospital, holding Luke while they took blood and gave the chemotherapy, stroking his head gently, I noticed hair just falling off his head with each stroke of my hand.  I hadn't seen it before, and although my wife has said for a few days she thinks his hair is getting thinner in certain places, I haven't been able to notice.  But seeing it falling out was tough.  I don't know if it's because if you can block out the fact Luke has a feeding tube coming out of his nose, he actually doesn't really look ill at the moment - he did six or seven weeks ago, when he had lost all the weight and his legs didn't work.  Then he looked awful.  But now, he doesn't - he looks great.  But when all his hair has gone, it will be another visual constant reminder that right now, Luke is ill.  Or is it that if the one visible side effect of the chemo has already started to happen, what about the side effects we know are likely but wont be able to see for ourselves - liver/kidney/heart problems etc.  Again I find myself feeling in awe, feeling terrified by and feeling a need to know, in more or less equal measure, exactly what is happening inside his little body.

We have just done an extra top-up feed after he first went to bed, so the night time one can be smaller.  Hopefully that will help him to stay asleep tonight.  I have quite a bit of work to do tonight having taken a chunk of the day off to go tot he hospital, so will end it there.  As I do, though, someone said something to me the other day which I keep thinking about.  They told me that today is a gift, that's why its called the present.  Don't worry too much about the past or the future to the detriment of getting the most from today.  Sage advice I think - those who know me know that I am a big worrier about the past and the future, and often need to pull myself back around to just living in the moment.  I will try to keep doing that more.

Staying positive (trying to, anyway!)

Today feels like it has been a better day.  Things are still largely the same as yesterday - Luke is progressing with the first cycle of chemo; his pain level is high so the oramorph is flowing regularly and just about keeping it in check; his legs seem to be slowing down again; and he isn't really interested in food.  But, with the pain under control, he is much more settled and comfortable than yesterday, which makes it much easier to take.

We learnt how to deliver top up feeds through Luke's naso-gastric tube today.  Not necessarily something I ever previously envisaged having to do, but it feels strangely great to be able to actually do something useful for him again rather than depend on the nurses all of the time.  We would have needed to know how to do it anyway before he comes home - but that might not be quite as soon as we had hoped.  The plan was for Luke and Letitia to come home early next week.  This cycle of chemo finishes on Friday, and the course of anti-biotics finished late on Monday/early Tuesday.  But, having discussed it with the consultants, if his pain levels dont subside quite a bit, everyone thinks he may be better off staying in hospital for them to observe and give pain relief.  As much as I can't wait to have them home again, we are pretty nervous at the moment.  If things get too much worse, there is even a possibility of more emergency surgery to relieve the pressure in his spine.  If he needs it, then so be it, but obviously we want this to be as straight forward as possible.

Luke will also have to have a blood transfusion tomorrow.  His red blood cell count is low, even though the chemo only started yesterday.  The poor thing cant have any of his own blood left - in the surgery on his back last month he had to have 150% of the volume of his own blood transfused during the surgery because he lost so much.  Which reminds me, I am due to give blood again any time now.

On the plus side, investing in the Britax Baby Safe Sleeper was a great move.  Luke only appears comfortable when flat on his back at the moment, and often needs to be wheeled around the ward (or just his bay if the tree of syringe drives is proving too tricky to wheel around with him).  The only problem is he fills up pretty much the whole length of it, and the lining seems to make him pretty warm.  Still, I'm sure in the grand scheme of things that isn't the end of the world.

At least we've started fighting back

So, to cut to the chase, chemo started today.  The first couple of doses of chemicals far stronger than anything that has ever entered me are working their way arond my son's little body, and are hopefully beginning to kill off the cancer inside him.  It is a momentous day, as so far, the cancer has had it's own way.  Other than surgery to de-bulk the tumour, this is the first real treatment of the disease rather than the symptoms. 

Other than that this has been one of the much tougher days,  Luke has been in so much pain, it is just like immediately before he was diagnosed (except his legs are still moving at the moment).  He is right off his food, so the only nutrition he is getting is through his NG tube.  The pain relief always seems to run out before the time for his next dose.  He is hoarse from screaming and just absolutely wiped out. 

I have absolutely no idea how quickly the chemo will impact on the tumour, and have no idea if the side-effects of the treatment will, in the short term at least, outweigh the physical improvement he may feel from it.  I only hope that it isnt this hard all year.

Tomorrow is another day... but before then I have to drive home, do some work and try to get some sleep.  I think I have the much easier end of the deal compared to my wife.