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.

Keep Calm and Buy Bras

Sorry about the lack of photos, i have some beauties but can't upload thanks to insufficient space - we have an awful lot of pictures on our hard drive...  will add them in later.


My cousin gave me a useful piece of advice about surviving this hideousness and it was this - to keep larking around.  I am not sure that it is appropriate to be so flippant during this horrible period of time but if being dragged into Guildford for some retail therapy a good lunch and a giggle with my friend Claire is part of this larking around strategy then it worked for at least some of the time today.


I am not entirely sure how we are going to get through the next few weeks but keeping on putting one foot in front of each other and getting through each day as best we can seems to be a reasonable way of tackling things.


Anouk is amazing, she is still going to school with the help of her wonderfully supportive teachers, teaching assistants and head teacher - and she loves it.  I had the pleasure of going in with her last week for one afternoon and it was amazing to see how, despite the fact she is miles behind her friends when it comes to her physical aptitude she still calls the shots in games and play and she is as sharp and as wise, as mature and as funny as ever.  The school has a pool and it was open last week, Anouk loves bobbing around and managed two swims a day for a couple of days.


We were busy with scans and hearing tests and lots of after school clubs last week and then went to Marwell Zoo on Friday night for "Dreamtime"  with lots of other "special" families.  Neave soon realised the "special" nature of the situation and although it was confronting it was also very normalising and comforting to see so many other families living their lives with a member of their family requiring extra support to get through the day.  The girls and got to hand feed giraffes, they were beautiful.


Richard has been working hard, putting in long hours and working over the weekend but things slow down on that front this week.


Anouk is now very unsteady on her feet, she needs assistance to get around and should use her wheely walker at all times but tends to take off on her own - she falls a lot.  She is no longer independent with eating and so we are feeding her, her speach is slurred and slow, her eye looks very dodgy as it strays sideways and as she can't blink and is very reluctant to have eye drops and so it is blood shot most of the time - not a good look.  Anouk knows what it going on but does not appear to be distressed or concerned about it, she just asks for help from any willing adult and gets on with it.

Us again

Thank you for all of your good wishes for the drug trial.  There has been a change of plan because, unfortunately the drug company who are "sponsoring" the trial (Merc) had already accepted a child from another centre on to this phase of the trial.  The whole point of a Phase one trial is to see what dosage of the drug children can tolerate, so they try it on a few children and then step up the dose.  Children can take much higher doses of chemo than adults and so the current cohort of children are on 100% of the adult dose and now we need to wait 3 weeks to see if any child has had adverse side effects.  Anouk will now be the first child on the next step up.  Therefore the trial will start on July 3rd providing Anouk is well enough.  She had her scan today so she is ready to go.  


In the meantime she is back at school and her usual happy self, she made me sing every song from the pantomime I was in in January all the way home from the Marsden and guess who remembered the words (not me!).

Drug Trial

The Marsden contacted us today and a place has become available to start this drug trial next week.  Anouk is going to have a scan on Monday afternoon and a hearing test on Tuesday and then, all being well will start the drug trial on Wednesday and have one night in hospital. We will then go up each day for a quick blood test every 24 hours until Saturday.

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.