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!

Sunday 11/3/12...The Going Gets Tough

Anouk stopped taking steroids last Friday and so we have had almost a week of her being much more herself with only the occasional strop and being able to walk more steadily, Mrs Wonderwheels has been left in the corner at school.

As of Thursday she started to become more unsteady & there has been a gradual decline since. At times she is determined not to have help but if she is tired she wants her hand held.

However 'life goes on' & during the last Anouk has had play dates with her friends who do not seem to notice that she is any different from them. Her closest friends Mum mentioned Anouk's face changes to Willow and asked Willow if she had noticed that Anouk looked different, Willows response was "No, I must have been away that day!" - Anouk herself seems to have no idea that she is any different or that she is unwell, she does not want to associate with any other children who are in her words "poorly" she continues to get on with things and generally to comply with any medical stuff that gets thrown at her. She had 2 days off school last week. On Monday we went to the pool in Guildford to play on & around..& around..& on the Pirate ship & Tuesday she woke up all hot & clingy intent on setting a new world temperature record. This initiated the well oiled cogs of the medical world to turn and we had a visit from the GP and the nurses to do a blood test but we felt rather fraudulent when they turned up and Anouk was sitting up drawing and her usual chirpy self...in fact multi tasking as Cbeebies was on at the same time.

This week we have had some lovely e-mails from Australia, a book which arrived from the author and the arrival of more beautiful quilt squares, with lovely notes, this all helps us so much. The quilt is going to be assembled in the next week, but we are (well Julia is) still in the business of making bunting and so if you would still like to contribute please contact Julia on jeheathcote@btinternet.com and she will send you a square, this project has been very therapeutic for us, the completed quilt is going to be absolutely beautiful, each square is wonderful and we know Anouk will be delighted by it and it will be a permanent reminder of how our friends and family helped us through this time.

Neave seems to be coping well, but also wants reassurance that the tumour is going to go away, we are honest with her and tell her that this is not going to happen and that it is growing, hence the wobbles, but at the moment she does not want the conversation to go any further. She is very supportive and loving of Anouk on the whole but does inevitably have moments of frustration at the lengths she is expected to go to appease her to avoid a tantrum - fair enough. She does not want us to say that the behaviour is due to the tumour "I know what you are going to say, it is because of her tumour and it is not - it is just her personality!"

We had a trip to the O2 arena to see Neave and 7000 other children sing in a massed choir, we did need binoculars to see her but she took part with huge enthusiasm and energy and was a delight to see, she was so excited. We have not felt like doing much this weekend and so apart from Friday night play dates for both girls and seeing an amateur panto we have had a quiet weekend together and with the extended family. The weather is improving which makes it easier to distract ourselves with simple pleasures....like a bloody big bonfire.

As the week drew on Anouk became more unsteady and is now not able to walk in a straight line, she looks as though she has been sneaking into the the drinks cupboard and to add to this picture, her words are slow and slurred and her right eye is squiffy, we think that her vision is affected but she does not seem to notice! She has had a couple of falls including one whilst she was helping Richard paint the shed when she fell and cut her lip, this upset her. Despite all of this Anouk's cousins have chosen this moment to cast off their old roller blades! and so Anouk has spent all day today trying to learn to use them.!. There no easy way to describe what this looks like but try to imagine & very drunk sting puppet who has lost control of her legs. There was also a early morning request today for a ride on Treacle. So on the phone it was a hey presto we are on treacle as requested. Then at lunch to Cousins decide to go swimming...in the pool she went. So now imagine a very wet & drunk string puppet with wonky legs.

It does feel as though we have entered another new phase and with this comes a mental adjustment to a new sense of loss for us and sadness for her, it is very emotionally challenging and It is becoming harder to employ all of the tried and tested strategies we have developed for coping with this but we still find the support of friends, family and each other is what keeps us going. We still have good days and today was a one of them.

5 year old anger management..!

The last week has been dominated by one word..Steroids! The aim of the steroids is to reduce the swelling around the Tumour and therefore reduce the pressure on the brain tissue, hopefully improving some of the symptoms of unsteadiness and facial weakness Anouk has been experiencing.

So the upside is that this week is that she has been much less unsteady on her feet. Anouk went to ballet and tap dancing which seemed to be out of the question a week ago, she has also not complained of any dizzy spells this week as we have been placing Hyoscine anti motion sickness patches on the back of her neck. However her face has remained unchanged and she has developed some more signs of pressure in other areas of the brain, with some blurred vision thanks to a squiffy eye.

The very big downside has been a severe case of 5yo anger. The top 5 yelled statements in the van't Riet household this week were ..."I'M NOT LISTENING TO YOU", "GO AWAY", "I HATE THEM", " SHUT UP" & "YOU'RE STUPID". This has been coupled with screaming demands for the impossible at that second including things such as.". I want to make a robot that moves out of some cardboard and a few empty tins". As much as we wanted to we could not pull that one off and so the volume got louder and more insistent. This grumpiness and disrupted sleep are the well know side effects of steroids at high doses. It isn't pretty when she is kicking off, she's not herself. We had aimed to improve her quality of life by putting her on this round of steroids but unfortunately the physical improvements have come at a high cost and there has certainly not been an improvement in life quality - we are hoping that that will come this week once the drugs are out of her system. I have suggested she's a bit like her mother at times.... this hasn't gone down well!

So this is made for an ongoing debate in our house, is it worth continue with the Steroids which give her more physical freedom but at the same time make it very difficult for us to cope with her anger & erratic sleep patterns and make her feel unhappy. In the end we did continue, missing only the last dose - but we would have to think carefully before giving them another go...

At school her balance & attention has been fine & Mrs Wonder Wheels was given a break for a few days. She enjoys being with her friends and has had no problems with behaviour at school. She seems to hold it together with other people, but is becoming more tired and so we may have to reduce her time at school this week.

Even our local doctors were not sparred the delights of Anouk's temperamental mood swings. We are getting great support from the local Medical Practice and the doctors are kind and very professional as are all the medical staff involved in Anouks care, so it was a tad uncomfortable when they came to see us on Friday morning and Anouk barricaded herself into her room. When Catherine was asking her why she wouldn't come out & she replied.."I HATE THEM"! One of the doctors then gently approached her door to tell her how much she had enjoyed seeing a video of her dancing... Anouk cut her off after a few words.."I'M NOT LISTENING"...coffee anyone?

The worst thing about this week is for the first time we have seen Anouk's delightful and easy going personality affected by her disease and this is confronting and upsetting for us and we are sure that it is very difficult for her.

Despite all of this we have kept life as normal, some friend from her class with Mums and some Dads went to pizza express on Friday night and on Saturday we went to watch Richard and friends at Band rehearsal and then over to Chiddingfold to friends for lunch. Anouk was quite clingy at both dos but got the occasional burst of energy. Neave loved running around and making assault courses in the garden with her friends.

On Sunday Anouk decided to treat her Father for his Birthday by getting him up at 4am..great. She was however very good once we calmed her down, and got a DVD into the laptop , mum & dad swapped beds before the 6am shift started after 2 hours of Charlie & Lola. We then had a lovely birthday breakfast with all 13 members of the extended family now living in Ewhurst, played with the cousins, fitted in a 45 minute strop courtesy of Anouk and then she was rejuvenated by a 5 minute power nap sufficient to get the the pub for lunch and back home for cake.

Anouk has had a planned day off school today and we took her to The Spectrum a swimming pool with slides etc and she loved it, she was back to herself... (but the wobbles are coming back).

Neave has had a great week, she is really enjoying school and school has been wonderfully supportive of her. We proudly attended her Friday assembly to watch her get her star of the week award which was awarded because"her positive attitude to all areas of school work make her a fantastic role model for the class". She stood in front of the school as she took the award and lit up the room with one of her amazing smiles. She is learning all about the Egyptians and had a visit from someone from horrible histories on Tuesday, she announced at 7.30 am that she needed to dress as an Egyptian for the day (there was obviously a letter we didn't read / lost!). We raided the dressing up box and managed to transform her into a passable Egyptian and then I spend all day worrying that she would be the only year 3 dressed in white with a sash around her waist. She seems to be coping well this week & we have explained the reasons for Anouks erratic behaviour & she accepted this and has generally tried to jolly her out of her moods.

Even though Catherine & I haven't been in celebratory moods with our Birthdays, we have had some great family time & are still lucky to be enjoying this time with Anouk. As you can probably gather if it is at all possible, we might be giving Steroids a miss from now on!