Saturday, 10 December 2011

Hospital, part 1

So they confirmed that daughter has ALL, which is the most common form of leukaemia, and the most treatable.  I suppose I felt  a mixture of relief that it was the least serious type (If there is such a thing?  It is still fatal for 10% of children with it) combined with anger that she has leukaemia in the first place.

Because daughter was over the age of 10, she was automatically put onto regimen B, or moderate risk.  There are 3 regimens of treatment for leukaemia: A, B and C (C being high risk).  

The start of regimen B was a stay in hospital for 4 weeks.

Hospital is a very difficult place to be.  Firstly, it was a children's cancer ward as daughter, at 12, was a year too young to be allowed on the teenage unit.  Compared to other wards, it is bright, well-equipped with toys and sources of entertainment and very hi-tech.  There is a charity that raises money that goes in part towards paying for play workers and equipment for the cancer wards.  This is because the disease is shockingly cruel and the stays in hospital can be long and arduous.  It is painted with beachscapes and the treatment rooms have wonderful murals on the walls.  It looks amazing.  They are trying to  mask the brutality of what happens in there.

We were living in a bay that had 4 beds.  Each child is permitted one parent/relative/friend of family to stay overnight (on the day of diagnosis both of us were allowed to stay, but this was the only time).  We get to sleep on fold out chair-beds with hospital sheets.  Because the children are there for a long time, you set up a temporary home there.  We bought a new duvet for daughter and some brightly patterned covers.  It made the area 'hers'.  

If a child has an infection that puts others at risk, they have to be isolated in a side room.  More on this later - we've done quite a few stints in these this year.

There is a parents' room with a fridge to put your food in.  There are a couple of toilet/shower rooms that everyone shares.  When the ward is full, there are 17 beds.  It is, more or less, always full.

One of the hardest things for any parent or child in this environment is having to adapt how you live amongst strangers, in the midst of this horrible illness.  Everybody does things differently - do you read a book, or watch television?  How loud do you watch television?  How late do you watch television?  How late do you allow your child to stay up?

Many of the children are toddlers.  This made it even more difficult to be there.  I am not talking about the noise - I have a toddler myself - it is having to see small children put through things that they do not understand.  At least we could talk to daughter about everything that was happening to her; explain it.  She understood each treatment was helping to save her life - even if they were very tough.

There is always a shortage of staff, and dealing with a number of different doctors can prove tricky, if different ones tell you different things.  More on this later, I think.  Dealing with hospital stays has certainly been one of the most draining parts of the process for both daughter and us as her parents.

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