childhood cancer

childhood cancer

Saturday, March 24, 2012

One big step closer

Well, after what feels like a long week, I brought Luke and Letitia home from the hospital this afternoon.  I intended to post something sooner after the operation on Tuesday, but having written a couple of times, decided my mind was too scrambled!

Ultimately, it is really great news.  Luke had his second operation on Tuesday.  It took far longer than expected, but the surgeon was unable to find anything resembling a tumour remaining in the spine.  She removed everything that looked like an abnormality on the MRI scan, and thinks that it is likely to be scar tissue from the original operation.  All of the tissue removed has been sent off for testing, but the expectation is that the chemo managed to kill off the tumour.  We couldn't really have hoped to be in a better position at this point, and if someone told us that would be the case right now when we were starting out on this journey seven months ago, we would have bitten their hand off for it.  We wont know or sure what this means for the rest of the chemo treatment plan until the test results are back.  We are due back in hospital in a week for the eighth round of chemo.  Then there will be at least one more, followed by up to six months of maintenance chemo.  Given that we have already had seven months, two major operations on Luke's spine, and seven rounds of chemo, on balance it feels like we well into the second half, even if not quite yet in the home straight. 

Tuesday was one hell of a day.  I knew it would be bad, having gone through the process back in August.  As it happens, it was almost worse than I remember the first operation being - although maybe that is slightly mixed up with coming to terms with my son having cancer, and the whole experience of allowing total strangers to hold your child's life in their hands was a new one.  This time around, we met the surgeon ahead of the operation - and although it appears that she has don a fantastic job, she did set rather optimistic expectations which don't help on the day of the op.  From the minute we took Luke up for the general anaesthetic I was a jibbering wreck.  Letitia was somewhat more rational until it came close to the length of time that the surgeon had indicated the operation would take.  As we sailed hour after hour past this mark, she also became like me.

When we were called up to the recovery room, Luke was quite distressed, but was calmed by a long breast feed.  The team explained that he had spiked a temperature half way through the operation, which meant they had to pause for a few minutes to understand why and make sure it wasn't anything to worry about at that point.  From then on we had the surgical recovery to deal with and a possible infection causing the temperature.

We went from recovery into the paediatric intensive care unit.  Luke was pretty much away with the fairies because of the amount of pain relief he had been given.  He had a morphine pump running with a background amount to keep the pain at bay, and a bolus button for us to give him boosts if the pain seemed to get worse.  He mostly slept, and didn't really try to move when he was awake. 

Wednesday was pretty much one of the hardest days of Luke's treatment so far.  He lad in his cot, and didn't even try to move.  We had to give quite a few boosts of the morphine, but it did have a pretty quick impact when given.  The issue was that we could only give a boost every 15 minutes, and although it worked pretty much instantly, often it wouldn't get him through the 15 minutes.  In the main it was OK, but for certain periods of the day, it wasn't too much fun.  As the day progressed, Luke did get more engaging and was happy playing - but was still not moving at all, laying basically on his back, slightly to one side.  He was happy to wave his arms around though.  At no point in the day was Luke really there, though.  I guess it was the morphine, but his eyes just didn't have their normal twinkle in.

Thursday started in much the same way that Wednesday had been.  It was quite amazing to see Luke struggle round from his back to his front, and the up onto his hands and knees, and finally to sitting up, shortly after lunch.  It took him an age to get there, and he was clearly in a lot of pain doing it, but obviously just decided he'd had enough of being on his back.  Once he was sitting up, he was fine.  Moving around OK, playing as usual, it was like a switch flicked inside him.  Since then, he has got gradually better, periods of pain have got fewer and further apart. 

We don't know what the cause of the temperature was, but having been high pretty much constantly between the operation and Thursday night, it fell overnight and stayed down all day on Friday and into Saturday.  The upshot is the surgical team were happy for Luke to go home based on the progress he made on Thursday; and our oncologist was happy for him to come home as his temperature had fallen and stayed down, and Luke was clearly happy.

We need to get the test results on the tissue removed from Luke's spine, and there are a host of potential issues that go along with the surgery which I will explain another time, but while it has been one of the tougher weeks, we are through it and one big step closer to a healthy Luke and a normal family life.


  1. Glad that your little man is doing so well.

  2. I just can't begin to imagine how difficult that week must have been for you all. Glad to hear he is on the road to recovery though, good luck.