Things are not Good

This will be a quick post just to let you know that Anouk has deteriorated very rapidly over the last 24 hours.  She was sick and headachy last night and then spent the day sleeping, waking occasionally in the morning once to ask "what we do-in today" and to stick her tongue out and kiss her sister and then to sing a few songs, including various Anoukified versions of ABC gummy bears are chasing me, one is having a pee etc  and down in the jungle there was someone picking their nose etc and then "right now I'll sing you a nice one".  She was drowsy but happy and peaceful this morning, her GP came out and her headaches were very well controlled on morphine, but later in the day her swallow went and she was hungry and thirsty and then became aggitated and more sleepy, she also developed a temperature.  So we gave our lovely community nurse a call and she has put a tube down (which Anouk did not protest at) and so now we can get food and water into Anouk and have been able to back off on the painkillers and start antibiotics.  I have been sleeping with Anouk tonight and she is still responding, just now waking to say she is thirsty and does not have a headache, she hasn't been sick tonight at all and she is very comfortable.

Holidays Roll On

Anouk and Neave have continued to enjoy the holidays, Anouk wakes up every morning with "what we do-in today and going to bed every night with "what we do-in tomorrow."  We have had play dates with friends and lots of swims in Cath and Mitch - next doors pool - they have left us in charge whilst they are on holiday and we have made the most of their generosity, swimming most days.  Anouk is very confident in the water and it is an environment where she can keep up with and interact with her friends on their level.  Both girls have been fascinated by the Olympics and have decided which events they will be competing in when they are older,  Neave has decided that Anouk would be able to compete in the Para Olympics!  Neave has also noticed that the medicine Anouk has been taking as part of the drug trial does not appear to be working.  There are signs that the pressure is beginning to build up in Anouk's head, she is vomiting in the mornings and has the occasional headache, she is having some difficulty with swallowing and she is no longer walking except with lots of support from us.  When she was looking sleepy the other night i asked if she was tired "no not tired,  just dozy in the head Mummy"  She is certainly not spending any more time resting or sleeping, it is taking a long time for her to get settled at night, she does not fall asleep until about 9.00pm and we lay with her until she drifts off, it is a tricky exercise prising myself out of bed without getting a "Mummy"  "Will you hold my hand" or "Mummy will you lay with me again".  Yesterday was a particularly challenging day, Anouk was quite sick and drowsy, but determined to do as we had planned and go to the "spectrum" a big swimming centre with pools and slides, it was clear from the start that it was going to be too noisy and busy for her and she did not settle into playing, i decided to take her to a spa pool and thought she would sit quietly on my lap and enjoy the relaxation - but no - she wanted to swim and then to climb the stairs and i decided to let her be independent with this - but she could not grab the rail and slipped - it took me about 5 mins to realise that she had blood down her chest and that her chin was cut and so we spent the next half hour in the first aid room before i asked her if she wanted to go home - but no - she wanted to go to the hospice as we had planned - so off we went for lunch, a train ride and a concert with 5 saxophonists.  Anouk appears to be unfocussed on her environment at times, but consistently proves that she is completely switched on, we were driving back from the hospice yesterday and she was lolling to one side looking semi comatosed, she reached out for a tissue and managed to grab one, i asked if i could help her and she said "no just a bit of dribble Mummy' as she purposely wiped her mouth clean. Then yesterday evening we were discussing what she was going to do today, i was off to work and Richard planned to take them to the cinema, Anouk stated that she would be going to the cinema if woke up feeling like she did at that moment - and sure enough she woke up - was sick and then went off to the cinema, out to lunch, out shopping, home had three lots of friends visiting.  Anouk is completely unconcerned about being unwell, she takes it in her stride as she always has, telling us what she is feeling and what we should do about it but not being concerned about it.  Neave is also coping remarkably well at the moment.

We have decided that from now and for the forseable future we will be taking things a bit more slowly and hopefully will have visitors dropping in and playing with the girls.  We will have more support from the medial and nursing staff with more regular visits.  

We had a leaving party for Fred and Sue at the weekend, they have made some good friends here.  Anouk chatted to any willing adult...

Prize for the best caption for this photo...

Lily and Serena are growing

 Becky visited for her birthday and both her an Pepper had a good smooch with Anouk

 Playing games and dens with Molly and family.

And yes it is the real thing...

Another smooch, this time for Nicola

School Holidays are Here

We had a busy build up to the holidays and things have not really slowed down since.  

Anouk missed a few days of the last week of term, she was tired and less willing to go to school than usual.  We then had an eventful weekend of headaches and vomiting which sent us into a bit of a spin but things then settled down and Anouk has not had a headache since.  She is ticking along, maybe a bit more wobbly on her feet, not really walking any more and with a permanently unmoving, squiffy eye but still herself and keeping us all on our toes.  She still loves art and craft but has delegated the doing and now just offers precise instructions about what colour goes where and what gets stuck down and with what and woe betide anyone who goes off piste and tries to exercise a bit of their own artistic license.  She is still wanting to catchup with friends and to be endlessly busy.

Neave is on really good form, she was in a street dancing show at a Guildford theatre yesterday.  We have been in and out of Cath and Mitch's pool (next door), down to the sea and had lots of playdates. 

We have an enormous paddling pool in the garden and have dived, cartwheeled and sat in that a lot.  

Lily and Serena (!) were born last Monday and have provided hours of entertainment. 

Anouk had her next lot of drug on Friday, the van't Riet Aveyard clan went on mass and took over Anouk's single room, we (the adults) have almost got over our hospital phobia and it is almost social catching up with Anouk's legion of nurses, doctor, play specialists etc etc - and apart from that the trial which involves a 2 hour intravenous infusion of medicine was uneventful.  Anouk tolerates all the pushing and pocking and when we got home, dictated a letter saying how much fun she has at the Marsden and how she likes all the smiling faces in there! This is the last time she will have the drug before a scan in mid August, and then they will decide if another cycle will go ahead.  If she deteriorates between now and the scan, we will not rescan but make a decision not to go ahead based on how she is. 

The sun is shining here and the Olympics have arrived - all very exciting - we went to have a peek at the torch relay - i am not sure how much we will get to watch as the tv doesn't really shift from what "she who must be obeyed" wants to watch! - it is a good job she is gorgeous.

Richard and a group of mates rocked Ewhurst - filling a marquee with 350 people - it was a fantastic evening.

Body Art

Neave's last day of school - she is vey excited about her new start at Moon Hall.

The clan en masse waiting for the torch to come through Shere.

And here it is

Granny Sue and Pa Fred celebrated their Golden wedding anniversary last weekend, we had a tea party at home - it was wonderful.

The girls and i went to visit Richard for the day at work, and were entertained by the art team (Thanks Cat and Mat) - making stuff - Anouk made a lot of badges.

Anouk and Neave will miss their Pa Fred and Granny Sue - they are back to Aus this week, but plan to come back to Ewhurst fairly soon.

We got together with friends from Anouk's class and had a picnic.  Anouk had made a mask at Richards work and commanded that her face should be painted in the same way....

And here are Lily and Serena.

Anouk completes reception - wow

The couple of days of the drug trial went well, other than a 24 hour delayed start.  Neave had a wobble on the first day and so we all went together, Neave went to the Marsden school room and the three of us topped and tailed in two single beds for the two nights we were in - not a lot of sleeping went on.  Anouk took everything in her stride and there were no apparent side effects, we went in last Friday for a quick review and they were happy that she had at least stabilised.  I am not so sure, but we will go with their opinion...


Anouk's eye is much better but will need regular eye drop and taping at night so that we keep it as healthy as possible.


We had a fantastic weekend of Ewhurst Carnival activities.  Richard compared all day and then drummed all night - with a group of mates - it was a fab night with 400 people in a marquee rocking on...  Anouk hoped from one willing adults shoulders to the next and boogied away - and loved it, staying up until midnight.  The girls spent yesterday with their cousins and then when it came to getting up for school this morning - not surprisingly Anouk was not having any of it.  So we had a duvet day.


We have gone into a flurry of activity about Neave's school because she has been struggling with her literacy for several years and things do not seem to be getting any easier for her.  We have made the very difficult decision to transfer her to a school for Dyslexic children called Moon Hall, it is only 5 minutes up the hill and it is attached to a mainstream school with strong drama and sports facilities - we hope that the change will be ok for her as she is happy and secure at her current school and it is clearly not ideal timing - however there is also something appealing about making plans for her future and she is very enthusiastic about the change, we hope that the very small class sizes and great teaching will soften the transition for her and that as she starts to succeed academically she will feel more confident and secure about this area of her life.  The buns at breaktime and compulsory boiler suit for pulling on over the uniform at lunchtime to play in the 65 acres of woodland are also quite appealing!  


Both girls got fantastic end of term reports - Neave's was spot on "she strives to make others smile and does so with such enthusiasm and personal enjoyment that it is hard not to be swept up along with her" and more amusingly "she finds the drama in every aspect of her school work" !!!


Richard is flat out at work, he had almost 48 hours off this weekend - sort of off anyway as most was taken up with the carnival - and now he starts another 12 day stint before finishing for the whole of August - yipeee.


The girls finish school on Friday until September and we are off to see the Olympic torch which will be carried close to home.  

Back at the Mars Bar

We spent the day at the Marsden today and Anouk had a grease and oil change as well as being prepared for the drug trial tomorrow.  She has deteriorated considerably since they last saw her and we were given the option to withdraw from the trial but we feel that we are on a path and that to make an alternative decision is too challenging for us emotionally, we also know that although nothing can be promised, the drug is unlikely to make Anouk unwell and that she will be very happy wherever she is at home or in the hospital - so it still feels like the right thing to do for the slim chance that it may help her a bit.  Anouk sang her way through the day, she was confident and relaxed and let the various medical professionals - and she saw an awful lot of them - do their stuff without fussing or complaint.  She is absolutely remarkable.  


We saw a speech therapist who looked at Anouk's swallowing - which is still good and she gave us some advice about how to manage Anouk's inability to open her mouth more than 8mm!  and some stretches which involve roaring like a lion and chewing like a giraffe - Anouk liked them...  The dietician is giving us some supplements - although at the moment Anouk is still managing to pack her food away despite the lack of space between the teeth.


We also saw an eye specialist at the eye hospital - as her eye looks pretty awful - and so we will start taping Anouk's eye closed at night and giving her more regular thick eye drops - which hopefully will help her avoid any more infections.  It appears as though she does not have any sensation in her eye which does not help as she does not see the point in treating an eye that for most of us would be very uncomfortable but for her is no problem because she can't feel it.


The blood tests and ECG were all normal.  As it is the 4th July in America and everything stops, the trial will start tomorrow once the drug company reopens and gets her paper work.  She will have the drug over 2 hours and then stay in for 24 hours for observation, we are going back for a blood test on Saturday and then will be checked each Thursday for the next couple of weeks before we get the drug again after 3 weeks.


Anouk spent a lot of time entertaining the clown doctors today - or maybe it was the other way around.  She has always loved them.

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...

Anouk is holding her own

We have had a good couple of weeks, Anouk has remained fairly stable, maybe a bit more wobbly but still her usual funny self.  She has crept back up to full time at school and continues to demand endless play dates and activities, showing less signs of fatigue than most children her age.  She is slow and immobile but her little friends are fantastic, she calls the shots and they slow to her pace to accommodate her every whim.  Here are the promised photos, they tell the story.

Anouk likes to watch tv and cbeebies on the computer, she loves Woolly and Tig, each show only lasts about 3 minutes so there the theme tune is invading my every thought.

Cheeky Meercats

Photos taken on our Dreamtime at Marwell zoo evening

We went to Peppa Pig World with Michelle and Sienna and had a great day.

The girls played hard and spent big at the school fair.

We went to a friends 40th and she had the biggest bouncy castle i have ever seen, Anouk spent a long time bouncing around on her hands and knees with her friend Willow.

And it seems to be children's party season - at the moment.

Maxine, who is a friend from the village, made Anouk a fantastic unbirthday cake which she shared with her friends at a tea party yesterday.  Thank you Maxine and Anthony.


That all for now.