We are all jubilleed out

 Anouk and Neave both had read white and blue days at school with their own street parties and tiara competitions.  Neave and I made Anouk's hat under strict guidance from Anouk.

Doesn't everyone dress like this when they go to a tea party.  No but Mum and Dad did!

The cousins had a lovely time. Neave was supposed to be a corgi and Anouk a horse!

Anouk and lovely Jo

Our Street Party in the rain.

The Queen payed a visit and enjoyed our scones

Mmmm

We had a great weekend of patriotic frivolity with lots of parties and community madness - It was great.  Now the girls are on half term break, we will do some catching up with friends.


Anouk had a scan just before we went to Greece and we got the results last week.   She had been improving and we think that that was because there was a cyst inside the tumour which has been reabsorbed and given everything a bit more space, this has been confirmed by the scan.  The tumour has continued to grow and is now quite large at 4cm, it is growing from the Pons into the Medulla.  


We are starting to notice the effects of the tumours growth and Anouk is now significantly less mobile than she was before we went to Greece.  She is very unsteady unless she holds our hand or uses her trusty Wonderwheels and she is having difficulty writing and is a very messy eater thanks to her shaky right arm.  She is very aware and compensates well, she still takes everything in her stride, accepting that is the way she is and asking any willing adult to help her as per her instructions.


Anouk is eligible for a Phase 1 clinical trial for another drug which again will have minimal side effects, it is a monoclonal antibody and will act on one of the pathways that causes cell division in cancer.  If Anouk remains well enough and we decide to go ahead with it then that will start at the end of June, it will not be a magic bullet but at best may help slow things and will help other children in the future.