19/1/2012
Anouk is only dong 2 full days a week, 3 as of next week, so she get a bit pissed off when she has to leave after lunch when all her friends are full time. She probably not as strong as her friends but we are to make it 3 days net week & keep things as normal for as long as we can. The scholl are very supportive & they have benn visited by teh Community Nurses & the guys form the Marsden. So like us tehy have received great support.
Saturday it was at The Magicians studio watching some 'Magic' with Craig Revel Horwood & the Hoff...
As much as Daddy was tempted to to explain how the 'Magic' works he was very restrained & just concentrated on how the shoot the blood stuff !
Sunday it was up to Birmingham to see "Cinderella". Brian Conley (Buttons) was the star of the show & thanks to Brain & Alan the girls were given the VIP treatment all the way. Anouk was brought up on stage towards the end of act 2 to have a chat & sing along with Buttons. Buttons asked what the other 3 kids had got for Christmas...ipads. xbox & new skateboard...Anouk said she got pens! Luckily her mother was the only one visible to the whole auditorium. Later backstage Anouk told Buttons that she also got farting putty....If only she had said that! She did sing "Old MacDonald" very well though & wasn't shy at all.
After the show we had a backstage tour to meet The Fairy Godmother, Cinderella, Charlie the horse & "Basil Brush"...very exciting....click on this link to see what Basil had to say...& what Anouk had to say back!
Just like her mother she's not short of a word!
After the show we caught up with Victoria (one of Richard's 3 English cousins) who lives in Birmingham with her husband Paul & Arthur, Iris & Freda...that was busy!
Our thanks To Alan & Brian Conley for organising a wonderful day full of great memories.
On Tuesday we had a meeting with Stergios, our oncologist which was an opportunity to discuss the scan results which showed that the tumour has grown from 5mm to 8mm in diameter since early December and is to the right of the centre of the Pons in the brain stem. We also discussed the potential course of the disease and confirmed that the best management option for Anouk is for her to be cared for at home by us together with the well coordinated team of clinicians from The Marsden Palliative Care Team, Chase Hospice, our Community Nurses and our GP all of whom we already know and trust, we can call for advice any time of the day or night and already have any medication we may need at home. It was a good chance to say our goodbyes and express our thanks for his help along the way. We can go back to The Marsden whenever we want , but we expect that we will not need to.
On Wednesday Neave had her first session with Ronnie who is the play therapist from The Chase Hospice in Guildford who specialises in working with siblings. We are not allowed to be around so exactly what happens we don't know but there were boxes of themed toys & Neave really enjoyed it & was excited to take part
It's Anouk's Birthday Jan 26 & we are having her party this Saturday in the Ewhurst Village Hall. so we will do an update on Sunday...when we have recovered!
Lucky girls meeting Basil Brush! Well done Anouk, for correcting him! He can be a cheeky foxy loxy! Neave, you have grown so much - even since last Summer. Hope you have a fantastic birthday party this Sat. Lots of love from the Bartles of Bonnie Scotland. xxx
ReplyDeleteHow very luck are you girls to meet basil brush, We loved the video and next time grab his nose....Take care family.
ReplyDeleteLove from the Fowlers down in OZ xxoo