VERY GOOD NEWS!

1830 30/11/09

We have just received the best news of our journey so far. Our consultant Stergious Zacharoulos arrived in Anouk's room smiling with a big thumbs up, the MRI is considerably improved from post op with only a tiny dot, which he is unsure the significance of - he is unsure if it is tumour or not - but what we do now know is that the tumour is not growing. The changes which looked like tumour on the post op MRI were probably mainly swelling or blood resulting from the surgery and have now - disappeared...

We have had a very anxious wait over the weekend as Anouk had a hearing assessment on Friday which identified that she is profoundly deaf in her right ear - the good news is that she is completely compensating with her left and so her overall hearing is "normal". We thought that this may be a new problem and so were very concerned that the tumour had grown - now it is clear that the deafness is as a result of the initial tumour and probably due to the acoustic nerve being part of the collateral damage of the initial tumour removal.

Father has learnt not to hold the phone to her right ear just after explaining to someone that she can't hear out of it!

We are now back in The Marsden & by no means out of the woods. Anouk will continue on the same regime with the third cycle starting tonight and a further two after this one. Anouk will then have 'high dose' chemo and this will all be followed by radiotherapy next year. We expect to be in the Mars Bar for about 18 days from today. This is cycle 3 of 5 & she will have another MRI after the 4 cycle..in about 6 weeks..ish. What is high dose..a shit load of chemo designed to knock it on the head...it's not a fun time though!

Also Anouk is eating far more than she has done over the past 3 months. Currently watching The Wiggles & munching on chrisps (UK for chips) & Humas dip. The extra bonus thats it's the Wiggles & not HI 5!

Despite the underlying concerns, Anouk and Neave continue to delight us and keep us smiling. We have managed some normal life activities with our lovely friends over the past couple of weeks - out for dinner, coffee, Sunday lunch, lots of play dates with Anouk who is on the greatest of form. Neave has been a bit wobbly but not at all surprising especially given we went out on Saturday to treat her and spend her hard earned pocket money and came back with new toys for both of them and a beautiful pair of 'shiny' new shoes for ...... Anouk - whoops. Neave has been promised new - shiny school shoes at Christmas! Despite what must be an extremely difficult time for her she is absolutely delightful with Anouk, she can find the buttons we can't to nip those two year old strops in the bud, and is thoughtful and considerate with her - the majority of the time.

We now begon a period separation for a few weeks. I am heading to Bristol tonight for work. Some of you will know that my Father (Fred) was diagnosed with Pancreatic cancer around the same time we found out about Anouk. We all have family solidarity but going out in sympathy is this way is taking things to the extreme dad! Fred starts his treatment of Chemo & Radiation this Wednesday & we all send send much love to PA Fred..also known as Fredo frog & Lord Fred....it's a long story!

This is what she was hooked up to for the Stem Cell harvesting.

Once again we would like to thank all of our friends & family who have supported us through this whole shitty time...the only way to describe it. Your thoughts & love have made a world of difference & kept us together...thankyou so much.