Drug Trial Starts this Week

After a bit of a will it won't it happen last week, we have had confirmation that the drug trial will start this week, on either Wednesday or Thursday.  Anouk will have the drug infusion over a couple of hours and then be monitored for 24 hours.  This will mean an over-night stay at the Marsden for both of us.


We had a lovely weekend down in a caravan in Battle near Hastings - with my sister Julia and the cousins we spent a lot of time in the pool and Anouk is very close to swimming on her own.  Neave and her friend Elin and myself and Elins Mum went on an "sibling fun day" on Sunday - it was great - we played soldiers with laser guns in the woods and drove motorised go carts and climbed on wobbly piles of crates in climbing harnesses - and then there were the bacon sandwiches and crispy cream doughnuts... Yum...  The caravan is owned by the Emily Ash Trust and the fun day was also organised by them, another charity doing great work for children with cancer and their families.   


Anouk has taken another slide over the past few days, she is very unsteady.  She is also having difficulty eating as she can't open her mouth very wide and so she needs to be fed with a small spoon and it is quite messy and her speech is quite slurred and a bit difficult to understand at times.  But she is still at school and still herself.  We are hoping that the drug has some effect on improving her function...