childhood cancer

childhood cancer

Friday, February 24, 2012

Nearly Home Again

So Luke has been in hospital for nearly two weeks now since going in with a high temperature the Sunday before last.  He just needs to finish his course of antibiotics, which should end on Monday, and I get my family home again (Letitia stays in hospital with him when he's in, so I'm home alone).  We were expecting that he would be in for the next round of chemo on Wednesday, so only a day or two at home next week, but we even have a reprieve from that.  I normally don't like delays in his treatment, but after two weeks without them home, I have to say that this time, I am pretty happy about it.

Letitia and Luke had a trip out today from our local hospital up to Addenbrooke's for a GFR test (test to make sure Luke's kidneys are still functioning well, as one of the side effects from the chemo can be kidney failure).  While there, it was arranged that his MRI scan will happen next Friday.  We have been waiting to find out when this will be, as the scan he had in January showed something which the spinal surgeons wanted to check again before operating.  This meant the operation to cut the rest of his tumour out was postponed, and in the mean time, the chemo continued.  Our consultant decided that with the scan set for Friday, he wanted to see the results of that and make decisions about surgery before more chemo. 

I was pretty anxious about the surgery when we thought it was going to happen in January.  The postponement meant that all the time I spent psyching myself up for it has to be gone through again.  I can't really explain it, but the surgery is a major operation, very close to the spinal chord.  There's a lot of risk with it (especially in my paranoid mind!) and it is one more step in this whole process that I would give anything to be able to do for Luke.  An added dimension to this operation is it will tell us exactly how successful the chemo has been so far.  We know the tumour initially shrunk, and has been stable for a while.  But as our consultant says, the tumour will either be a dead mass of cells ready to be cut out (good news), or will be a 'healthy' tumour, effectively being contained by the chemo, but not killed by it (bad news).  If it is the latter, there then becomes a question over how successful the chemo can be in mopping up any stray cancerous cells around Luke's body.  We'll know more soon I suppose.

For the GRF test, Luke has to have a cannula, which is basically a needle into a vein which can have syringes and other things attached to it to put things directly into the blood.  They can't use his hickman line, as they put a radioactive substance in, which would contaminate the line.  Blood is taken 2 hours, 3 hours and 4 hours after putting the radioactive stuff in, which measures how much is being cleaned out by the kidneys.  Because of the hickman line, Luke doesn't have to have cannula's very often, which is brilliant.  For a while back in August and September, it became like he was a pin cushion, and they even ran out of veins they could easily get to for a while.  Having to hold him still while doctors tried time and time again to find a vein with a needle were some of the other occasions that I would have given anything to have gone through it instead.  But, Luke is a tough little boy, and even if he may have screamed while they were doing it, he always got over it almost instantly.  Letitia said today he was a bit put out for a while because he would use both hands to play with his toys (one hand was quite heavily bandaged and hand a splint to stop him pulling the cannula out or catching it on anything).  Once he got used to crawling and playing with just one hand, he was fine.  It made me think back to August, on the day of his first operation.  He couldn't use his legs (they stopped moving, which is why we got sent to Addenbrooke's for an MRI to begin with - to find out why he was basically paralysed from the waist down), and he had a cannula in one arm with a big splint and bandages.  It was a pretty difficult emotional time, but before he went off for the operation, we had some time with Luke in the play room on the ward.  He was laying on the floor, smiling and laughing with us, one arm and both legs out of action, and frantically waving his other arm.  He was in such good spirits even then (undoubtedly helped by some pretty strong pain relief at that point) - they way Luke has dealt with this whole nightmare has been the single biggest thing that has helped me deal with it. It may sound strange to say it about a one year old boy, but my son is my hero - far tougher than his dad, a real little trooper who is just so happy so much of the time.  I can't wait to spend some time with him and Letitia this weekend, and then get him home again next week.

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