Sunday 11/3/12...The Going Gets Tough

Anouk stopped taking steroids last Friday and so we have had almost a week of her being much more herself with only the occasional strop and being able to walk more steadily, Mrs Wonderwheels has been left in the corner at school.

As of Thursday she started to become more unsteady & there has been a gradual decline since. At times she is determined not to have help but if she is tired she wants her hand held.

However 'life goes on' & during the last Anouk has had play dates with her friends who do not seem to notice that she is any different from them. Her closest friends Mum mentioned Anouk's face changes to Willow and asked Willow if she had noticed that Anouk looked different, Willows response was "No, I must have been away that day!" - Anouk herself seems to have no idea that she is any different or that she is unwell, she does not want to associate with any other children who are in her words "poorly" she continues to get on with things and generally to comply with any medical stuff that gets thrown at her. She had 2 days off school last week. On Monday we went to the pool in Guildford to play on & around..& around..& on the Pirate ship & Tuesday she woke up all hot & clingy intent on setting a new world temperature record. This initiated the well oiled cogs of the medical world to turn and we had a visit from the GP and the nurses to do a blood test but we felt rather fraudulent when they turned up and Anouk was sitting up drawing and her usual chirpy self...in fact multi tasking as Cbeebies was on at the same time.

This week we have had some lovely e-mails from Australia, a book which arrived from the author and the arrival of more beautiful quilt squares, with lovely notes, this all helps us so much. The quilt is going to be assembled in the next week, but we are (well Julia is) still in the business of making bunting and so if you would still like to contribute please contact Julia on jeheathcote@btinternet.com and she will send you a square, this project has been very therapeutic for us, the completed quilt is going to be absolutely beautiful, each square is wonderful and we know Anouk will be delighted by it and it will be a permanent reminder of how our friends and family helped us through this time.

Neave seems to be coping well, but also wants reassurance that the tumour is going to go away, we are honest with her and tell her that this is not going to happen and that it is growing, hence the wobbles, but at the moment she does not want the conversation to go any further. She is very supportive and loving of Anouk on the whole but does inevitably have moments of frustration at the lengths she is expected to go to appease her to avoid a tantrum - fair enough. She does not want us to say that the behaviour is due to the tumour "I know what you are going to say, it is because of her tumour and it is not - it is just her personality!"

We had a trip to the O2 arena to see Neave and 7000 other children sing in a massed choir, we did need binoculars to see her but she took part with huge enthusiasm and energy and was a delight to see, she was so excited. We have not felt like doing much this weekend and so apart from Friday night play dates for both girls and seeing an amateur panto we have had a quiet weekend together and with the extended family. The weather is improving which makes it easier to distract ourselves with simple pleasures....like a bloody big bonfire.

As the week drew on Anouk became more unsteady and is now not able to walk in a straight line, she looks as though she has been sneaking into the the drinks cupboard and to add to this picture, her words are slow and slurred and her right eye is squiffy, we think that her vision is affected but she does not seem to notice! She has had a couple of falls including one whilst she was helping Richard paint the shed when she fell and cut her lip, this upset her. Despite all of this Anouk's cousins have chosen this moment to cast off their old roller blades! and so Anouk has spent all day today trying to learn to use them.!. There no easy way to describe what this looks like but try to imagine & very drunk sting puppet who has lost control of her legs. There was also a early morning request today for a ride on Treacle. So on the phone it was a hey presto we are on treacle as requested. Then at lunch to Cousins decide to go swimming...in the pool she went. So now imagine a very wet & drunk string puppet with wonky legs.

It does feel as though we have entered another new phase and with this comes a mental adjustment to a new sense of loss for us and sadness for her, it is very emotionally challenging and It is becoming harder to employ all of the tried and tested strategies we have developed for coping with this but we still find the support of friends, family and each other is what keeps us going. We still have good days and today was a one of them.