childhood cancer

childhood cancer

Saturday, January 14, 2012

A good place

We had a scan at Addenrbooke's yesterday - Luke's fourth MRI before his first birthday.  The aim was to look at the tumour in his spine, see what the chemotherapy is doing to it, and hopefully decide that the time is right to surgically remove the remainder of the tumour.  The hospital has an oncology team meeting on Wednesdays, at which Luke's scan results will be discussed, so hopefully we will know what the plan is by the end of next week.

Luke needs to have his MRIs under general anaesthetic, as the oral sedation doesn't work for him.  That makes it a little more complex than it would otherwse be, but he deals fantastically well with things.  Yesterday was one of those days where, because of the GA, we couldnt feed him since the previous evening, and he couldn't have a drink all morning.  Add in an hours drive to the hospital (Luke's list of favourite places wouldn't include the car) and we have a recipe for a really tough morning keeping him going until they give the GA.  As it is, he is really pretty good with it all, and just seems to carry on.  There might be the occasional grumble, but nothing major.  I dont think I would be quite as good with it - especially if I didnt actually know why is wasnt being fed or watered, which he cant possibly.

We are at the point in time where we would normally be starting the next round of chemo.  The scan and hopefuly the surgery means that we are still some way from that.  It is great to have a bit of a gap, as we are really seeing Luke back to something like normal.  He is eating pretty well (although in the last few weeks his weight has stayed excatly 8kg, so he has stopped putting it on).  He is pulling himself up to standing, and begining to use his walker (very tentatively).  He is really coming on strong, and all of the thoughts I had back in August and September about having to deal with late development problems because of the effects of either the cancer or the treatment do not appear to be anything more than fears and anxieties. So far, we have been extremely lucky, and every step has been towards the best case end of the scale (except for thevery first step of Luke being ill and the diagnosis being cancer - that wasn't exactly lucky!). 

I have to say, the Paediatric Day Unit at Addenbrookes was absolutely packed yesterday, far busier than we have seen it before.  I know they had a bit of catching up with different patients after the Chrsitmas and new year break, but they really were running at the abolute limit of what they could do.  The nurses worked like absolute troopers, as did the other services we came into contact with (the GA team had two or three paediatric GAs to do before us, and our scan was at 11am, so the team was with us by around 10.30 or just after).  The MRI was obviously fully booked for the day, as the number of people in the waiting area for that was more than normal.  But it all went like clockwork - they really worked terrifically well. 

So we have a bit of a waiting game again now.  That I dont mind.  I am aprehesive about the surgery, as I know it is a major operation very close to the spinal chord, but Luke recovered so quickly from the first op that once it is over, I expect he will be fine pretty quickly.  Then the chemo continues, for at least five months, possibly the rest of the year. 

Luke's first birthday is in a couple of weeks.  It really doesnt feel like he's been part of our lives for nearly a year.  I woul do anything to mean he didn't have to go through all this treatment, and especially to mean he didn't have any pain before the tumour was diagnosed.  But, he is handling everything amazingly well, and we wouldn't change a thing about him.   

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