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.

We are back...

We are back to real life after a couple of weeks of fantasy land - it was great...

Anouk's wish came true with the help of the real Sleeping Beauty, a pink stretch limo a trip o the London Eye, a tea party and a sleep over at the Millenium Hotel.  It was incredibly uplifting to see the girls having such a fantastic time.  The wish was fulfilled by a charity called Rays of Sunshine and we are so grateful to them for their kindness and generosity.

Gavin gave his time to put a video of the tea party together and you can find it at this address:


http://vimeo.com/42342953


the password is...     princess   !!


And then we went to Greece

It was Fab.

It is raining again but are we worried - No - we are off to Greece!!!

We have had a period of life as normal.  Anouk remains better than she was just before Easter but there are some signs that she has started to deteriorate again, she is a little more wobbly and her speech is rather slurred, however she remains herself, very happy, chatty and charming.  


We went to see our oncologist who was very pleasantly surprised to see Anouk walking through the door and looking so well, there is no doubt that the tumour is growing but slower than expected and so it is good news however we look at it.  Stergious thinks that a cyst that was in Anouk's tumour at the last scan has been absorbed or burst and given everything in her head a little more room, hence the improvement over Easter.  It has been so good for us to have some mental respite from this - whatever the reason for it may be and for this we are very grateful.   Anouk is having a scan this week to reassess things but we do not expect that this will change the way the tumour is managed.


We have decided to embrace the improvement and go on holiday and so are off to Greece for a week! We  are almost beside ourself with excitement and it is one of those holidays where you do not even have to think about where to have dinner as everything including sports and water sports is included - so I plan to arrive at the airport and disengage brain for a whole week... Yippeee


But there is yet more excitement - Anouk has decided that she wants to meet Disney's Sleeping Beauty and so a charity called "Rays of Sunshine" have offered to make her wish come true so we are off to London this week to have a tour of the city, a trip on the London eye, a tea party with some of Sleeping Beauty's friends and a night at a hotel... Anouk has been hilariously specific about what food she wants for the tea party and what games she wants to play and so a list has been sent outlining Anouk's specifications... she had a special delivery yesterday, a letter all the way from Disneyland written by Sleeping Beauty telling her all about what to expect from the wish and a dress for each of the girls - Anouk has not taken hers off since and so a dread to think what state it will be in by the time she actually meets the Princess!

Richard is back to work and is busy, it was time for him to go back and he is enjoying it.  He is also rehearsing with a band for our village carnival in the summer.  I have done a few days of teaching which is coming to an end but has been great for the grey cells. 

There have been a few parties and lovely family times.  

Neaves friends Flo and Willow had a joint birthday party and here is a picture of Anouk and the birthday girls

And Neave was busy painting nails and i went along too and.... gossiped with the other Mums.

Anouk is getting a weekly visit from Jaqui, her nurse or Helena, her carer at the local hospice which gives us time to spend with Neave, the idea was that Neave got a bit of special attention during this time but it rather back fired (as it tends to) this week when Anouk came home from her trip to her ballet class having had a drink in a cafe and having been brought a present... 


Neave has been struggling a bit, her Play Therapy has come to an end for the time being which seems appropriate but she seems a little wobbly and cross - we are hoping that time together over the next couple of weeks will help us all...


Fred and Sue are still here and Fred is planning industrial style renovations to the house, Granny Sue celebrates her (shhhh) 75th birthday next weekend. 

For those Ausys who are complaining about the weather in Melbourne - it is colder here, pissing down with rain and it is supposed to be late Spring! Neaves school brightened up an event that was supposed to be heralding the warmer weather by May Pole Dancing.

But it was cold

 Anouk and her friends today

And Anouk and I tonight

We had an amazing and incredibly emotional surprise about a fortnight ago.  Richard met an old friend from Aus in London and was given a parcel to be opened "when we were all together" - which we did, it contained bears for the girls, a crystal bracelet for Anouk (Thank You) and a DVD - which we sat down and watched - it started with some words from a lovely friend of ours (Di Pope) and then moved into the most beautiful version of Somewhere over a Rainbow sung by a group of about 40 friends of Richards from his days of working with a musical theatre group.  They got together for about 5 hours one weekend and led by Tony King and inspired by Di they made this amazing piece - and what can not be said in words was told so clearly by the amazing sound they made.  It was so special and we are so grateful that people have been so generous with their time and talent - Thank You - we were surprised, warmed and moved by your lovely gift..


Here is the link to the song on youtube:


http://www.youtube.com/watch?v=f97DltkzlGA&feature=youtu.be

still ticking along...

Hello All..

Apologies for the lack of an update but Anouk is still well in herself & going to School eventhough slowly but surely her body is having problems.

She her balance has has gradually got worse over the last 10 days but she is determined not to have help when it comes to doing things at school or with friends. when she is with us & tired she will let us help her but otherwise we are told in no uncertain terms to bugger off!

This was apparent when I was to walk her form school to the local Field centre which was about a mile or 2 from school. She didn't want me to be there from the start but it was a backup plan if she got tired along the way & I could carry her. World War 3 broke out in the class room just before they all left she wasn't happy so I left & yes she walked, with Sharon's help, all the bloody way. She was happy to use the worlds biggest Maclaren Buggy around the Filed Centre but that's only because the other kids wanted to have a go as well!

She is now shaking more than she did 10 days ago especially when she is putting something in her mouth & is struggling to eat normal meals as well as she has. She gets there but it takes a while & we have had a few frightening choking moments which she finds a great laugh & we belt the living day lights out of her back to clear the blockage!

Here right eye is still heading North East but it does not seem to bother her. She is reading well & is as keen as ever to learn

Her words are slurred at times & like all things it gets worse when she is tired. Sleeping has been better but there have still been plenty of Anger moments which we still believe are behavior based...which think!

Mother's day was big event & the girls went all to to spoil their mother..

So we roll along. Mentally Anouk is a as sharp as ever & it feels as though the f...ing Tumour is taking it's time. We are having a great time with her as both Catherine & I are home all the time. Neave is also going OK . She had a session with her 'therapist' yesterday in which she said she was worried something bad was going to happen to Anouk. Asked if she was thing of the D word Neavey said yes. So the time with Neave is getting closer it's a matter & when is the best time to tell her more.

As Anouk's boy goes down hill it brings with it more sadness for us but we have been lucky to have this amount of time & we are doing our best to get on with life & enjoy every moment as much as possible.

As always we been getting a huge amount of support form our family & friends & with with this good weather we're going to have a Barbie on the weekend. No bloody Fosters will however be served!