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.

Saturday, March 17, 2012

Mental Preparation

So, after what seems like ages of waiting for the second round of surgery, we have a date.  Addenbrooke's phoned on Wednesday afternoon, and we are in next Tuesday.  Scary stuff, and took us more than a little by surprise - I think we expected a little more notice.  But, having thought about very little else since I got the call to say Addenbrooke's had phoned my wife, I am quite glad that there isn't much notice with it, as it would just be even longer for me to dwell on it and get worked up!

We had to go to Addenbrooke's to meet the surgeon yesterday - a nice little treat for Letitia's birthday!  For a start, it was the first trip to and from Addenbrooke's in one day without Luke being sick in the car.  It doesn't make sense in terms of time since last chemo, but we have stopped doing top up feeds over the last couple of weeks, as Luke has reached the weight trajectory he was on before getting ill, so we didn't want him to keep piling it on through top up feeds.  That seems to have enabled us to wind down the anti-sickness drugs sooner than usual too.  It all makes sense I suppose - you eat until you are full.  If someone then forces a load more food into you, occasionally you are likely to feel a bit queasy. 

The surgeon explained the operation she is planning, and how it will work based on what the latest MRIs have shown.  Having not really known what to expect before, we kind of expected a re-run of the operation Luke had in August when the tumour was first identified.  Ostensibly it is the same, but as the tumour to come out is much smaller (about the size of a thumb nail now, compared to a whole thumb before) it should be possible to do it without removing and replacing discs from his spine this time - although some bone may have to be removed.  It will requires going right up to the spinal chord, so I have had to sign a form saying that I understand that a key risk of the operation is paralysis.  Personally I think that is better than August, when an expressly stated risk of the operation was death. 

All in all, the operation should be shorter and less invasive than the first time around - but that is not to say that it isn't still major surgery.  One thing which wont be known until the operation starts is whether part of a nerve system has to be removed.  If it does, because the tumour is attached to it, then Luke will permanently have a numb area down one side of his body.  Apparently it is an area where several nerve systems overlap to some extent, so it wont be too pronounced, but all the same, is another long term effect of all of this which means even though he wont remember any of it, Luke will certainly know what a battle his body has been in. 

Luke hasn't been sleeping at all well lately - waking three, four, five times a night.  It is gradually wearing both Letitia and I down.  On top of that, for the last week I have had a cold ad have tried to avoid being around Luke, but today he seems to have picked it up.  Hopefully it wont mean anything as far as Tuesday goes - just a runny most at the moment.  As long as it doesn't build up on his chest hopefully it wont stop anything going ahead. 

As usual, work are being terrific and supportive.  I don't know what will happen overall next week, but definitely need a few days off, possibly nearly all week.  I am extremely fortunate to work in a team where I am not made to feel like that is a problem.  Grated, I will be working extra to catch up in the coming weeks, and not everything that I would be doing at work will get done while I am away - but everything that has to happen, will happen, regardless of how busy others are.  I don't know how people deal with situations like we are in without supportive co-workers and understanding bosses.

While I remember, I have just sponsored my good buddy Rich and a few of his friends, who collectively are running the London Marathon as Team Louis in aid of Children With Cancer UK.  Just in case anyone reading this feel sufficiently moved about children with any form of cancer, then the link to donate to the team is  - I know all amounts will be gratefully received, no matter how small. 

We'll let you know who Tuesday goes once things are stabilised a bit after the op.

Sunday, March 4, 2012


At the hospital. Luke is asleep for his lunchtime nap, and has been in top form this morning.  All being well, we're out of here at about 4pm.  Should mean we get home in time for Luke's dinner, bath and bed.  Once again I just can't wait to get him and Letitia home.

We had an MRI booked on Friday 2 March. That should be the last thing needed before surgery to cut the rest of Luke's tumour out of his spine. After a bit of to-ing and fro-ing during the week over whether Luke would be coming in for another round of chemo, it seemed to have settled on not doing any more before the surgery.

Imagine our surprise (and frustration) at being asked to stay in for more chemo when we arrived for the scan on Friday.  Basically communications broke down a bit last week, and everyone has apologised and said what they will do to make sure it works better going forward. Having created a problem, the hospital have been very good at resolving it. Ultimately, Luke's treatment is the most important thing in our lives right now. If we are told to jump one way or the other for it, we absolutely will. But we can only do that if ee are told which way to jump- being told conflicting information, or just bits of the story, means we weren't prepared this time.

Still, no problem. My parents in law were a huge help on Friday bringing up everything that we would normally need for a stay in hospital (which saved me a couple of extra hours driving and meant I could stay at the hospital all afternoon on Friday). And my mum has been to the house to do all if the ironing which was starting to build up again. Household chores tend to get de-prioritised while Luke and letitia are in hospital, and with about three of the last four weeks spent in, I haven't been as on top if it as Letitia would normally be.

So, we're expecting a call next week once the great and the good have looked at the MRI, and hopefully a date for surgery. I am dreading it, but can't wait to get that over with. Until then, barring spiking temperatures or other issues, hopefully we've got a good couple of weeks now without seeing the inside of a hospital.