childhood cancer

childhood cancer

Friday, September 23, 2011

Bad back baby transport

Today Luke had his bone scan.  We wont get the results until Monday, but at least it is another task out of the way.  Even relatively straight forward days like this make me worry, as Luke needs a general anaesthetic for these scans, as the oral sedation that they give many other kids doesn't send him to sleep.  I know the risks of a general anaesthetic are pretty low, but it still worries me.  Plus we have the added bonus of having to keep a baby distracted for all the hours that he cant have anything to eat beforehand.  Having said that, Luke was brilliant this morning and slept through quite a bit of that time.

The plan from here on in is to continue the antibiotics until a two week course has finished.  That means around another ten days.  However, the intention is also to start chemo next Tuesday.  By the time this first course of treatment is finished, there will be more than enough time to finish the antibiotics before Luke's immune system starts to suffer from the effects of the chemo.  Obviously we are also pretty terrified about what the chemo will do to Luke, but at the same time I cant help being really keen to get going with it, sand actually feel like we are fighting back for the first time.  Plus, the sooner it starts, the sooner it is over.

One of the first practical issues we encountered in dealing with Luke's cancer was Luke not being able to sit in his car seat after the surgery on his back four weeks ago.  It was pretty marjor surgery, to de-bulk a fairly large tumour from within his spinal column.  For several days afterwards Luke was on morphine, but recovered the movement in his legs very quickly.  His back has only seemed to bother him over the last couple of weeks if he has been sat up for too long (which means more than a few minutes sometimes).  We had to use his car seat a few times (to get home from Addenbrooke's, and then to go to our local hospital for daily check-ups while he was at home waiting for the tumour biopsy results to come through).  Each time, he ended up screaming in a particular way that we have come to associate with him being in pain.  So, we had to find an alternative.

There are a couple of lay-flay car seats on the market, but not a huge range.  These are basically meant for new-born babies.  Having looked into them, we bought a Britax Baby Safe Sleeper - meant for babies up to six months old, or 10kg.  He is older than six months, but considerably under 10kg, and initially it worked very well.  Given Addenbrooke's is nearly an hour's drive away, and we are making regular trips, we need Luke to be comfortable - and since we bought this lay-flat car seat, he has been absolutely fine in the car.  We even bought a Britax B-Mobile pushchair off Ebay so we had the wheels and could take the lay-flat car seat straight out of the car and make it into a pram.  The trouble is, Luke is a tall baby, and only has about another half an inch to go before he will be too long for it.

I have struggled so far to find any solution as to how babies with back issues are safely taken in cars.  I assume we aren't the first parents to face this issue, but so far haven't been able to find an answer.  The physiotherapist at Addenbrooke's is also investigating for us.  If we find out, I'll post the answer.  Regardless of how well Luke continues to recover the strength in his back, this is an issue we will face again, as the plan is for thime to have a second operation to remove the remaining tumour once it is established that the chemo is working, and by the time that happens, I am sure he wont fit in what we have.

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