childhood cancer

childhood cancer

Sunday, November 27, 2011

Steadily carrying on

I cant believe another week has already passed by since my last post.  It's been another seriously busy week, which is why I haven't had time to keep the blog up to date.  Luke has now had chemo round number three, and is back home again.  He went in on Tuesday morning, and was back home again on Thursday night.  He is getting to be a dab hand at dealing with things in hospital really well.  There weren't any dramas, any particular problems, everything went exactly as planned.  Which is terrific, as we've had enough surprises this year and just yearn for the quiet life for a while. 

The nurses were all really impressed with how much weight Luke is putting on.  I am amazed that he is managing to, as he has fairly long periods where he wont eat in between chemo rounds.  We have been doing the top up feeds with Infatrini, but I have been  little dubious about how much it can really help.  Turns out the stuff must be mde with rocket fuel - Luke has bags of energy on it, and he is putting weight on nicely.  We are at the stage again now where he isnt eating properly - and I don't think he will for another week or so (althouh Granny has made a really nice looking carrott soup for him which he seemed to be interested in earlier, even if he didn't have a whole portion - hopefully tomorrow he will have more of it).  He doesn't seem to bad otherwise as far as chemo side effects go - between the second and third round there waas quite a lot of sickness, and generally appearing to be uncomfortable and unsettled.  This time (so far) the anti-sickness is working well, and stopping eating is the only real visible side effect.  He is a happy little chappy otherwise at the moment, which is just so amzing to see, knowing and appreciating what his little body is being put through. 

We are stuggling a little with finding hats which Luke can wear in bed.  As he has lost most of his hair, and has gone through a period of waking at strange times, we wondered if his head was getting cold.  Trying to find a bed hat big enough for a 10 month old to wear has been a challenge - M&S came up trumps, but there isnt too much room to grow in them, and we have bought their biggest size!  It will do for now, but it anyone has any ideas it would be helpful.

We dont know anything further about the radiotherapy in Florida at the moment.  We've been looking on the website for the organisation, and it certainly looks impressive.  The first big question is will the NHS cover it - as I mentioned in the last post, our consultant is pretty confident that they will.  I really hope so, otherwise the mortgage will be going up, and we'll be investing in some collection buckets.  Either way, if that is the place that can help to cure him, then that is where we will go. 

My mum popped round earlier, and mentioned something which got me thinking.  One of my relatives has a little girl with childhood arthritis.  There is a lot of treatment involved in that which the girl doesn't like too much (injections and so on), and clearly a degree of pain and discomfort throughout much of every day.  I remember at the start of this year, when my Nan was ill in a hospice, seeing this relative at the hospice - and she was telling me a little about what life was like.  It didnt sound like anything anyone would choose to go through - and from the outside you can say 'I just dont know how you cope with that'.  As we have found at, as parents you find a way to cope - and you just simply do whatever it takes to get your child what they need.  What I thought this afternoon when my mum mentioned this relative was, at least Luke should be cured of his cancer and go on to live a normal, healthy life.  Obviously there is a long way to go before we can say that is what has happened, but that is the aim - cure.  Cancer gone.  Doesn't come back.  Ever.  Not everyone with an ill child has that hope or goal to aim for - they know that the illness is for life, and so is the treatment.  That is tough, and must be a real mind bender.  What we are dealing with is awful in a million different ways - but at least we think it will all be over one day.

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