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!