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!

Mon 27/2/12...Bring me my trike..

After a difficult week of adjusting to Anouk's wobbly legs we have had a great weekend & Catherine & I are feeling much better and have gone back to enjoying every moment. It's easier when we are with the girls as they are so joyful, there is no option but to be joyful ourselves - the lovely sunny weather helps too...

Anouk is wobbly but generally on good form. She did look a bit worse today with her hands shaking at dinner tonight but there were no problems at school. She said to Catherine..."Mummy I know why I keep bumping into things" at this point Catherine was waiting for something profound...instead she said...."because I don't know where I am going.." If only all the answers could be that simple.

There were no major issue with Mrs Wonder Wheels at School last week & today & we are very relieved to have Grandma & 2 other close friends in place to be with Anouk whilst she is in class.

The biggest priority for us Anouk's quality of life. She loves school & the longer she can do that the happier she will be. We know the time will come when she can't but we believe Anouk will accept that based on the condition she may be in at that time.

The week ended with both girls at Parties with Neave planning to have a sleep over at her Cousins but in the end she was missing her mummy & came home! Anouk's auntie didn't get the girls to sleep until 3.30 am so it sounds like Neavey made the right decision.

On sat we got Anouk's trike out for a ride & she absolutely loved getting back on it again. She has no fear & was off like a rabbit. It's a fantastic trike that was donaated by Cyclists Fighting for Cancer (http://cyclistsfc.org.uk/) in May of 2010. They are a wonderful organisation & we once again thank them as Anouk would struggle on a bike with trainer wheels. The trike gives her freedom & some excitement especially when her father pushes her too fast & she turns 2 quickly...luckily she quickly developed good 2 wheel control..stunt driver like!

Sat both girls had play dates & Granny Sue & Pa Fred baby sat which alowed us to get out to see friends & there were no issues.

It was more trike riding on Sunday With Phil & Lisa Marie visiting and we had a lovely lunch with them. We have got a busy week of play dates planned & will start the steroids tomorrow as we hope that these will reduce the swelling in Anouk's head and hopefully help her wobbles and her dizziness.

Anouk has been waking very early for the last 3 day 5am, 5am & then 4am on Sunday morning bright as a f...ing bell! However she reverted to the default time of 7am this morning...horay. We have started the 5 day course of Steriods today & in the past they have kept her awake to all hours so we shall see what happens...!

Thurs 23/2/11...Mrs Wonder Wheels

As has been the norm over the last 2 + years, this week has been a classic roller coaster ride of emotions. Anouk herself is just rolling with the punches & getting on with life but Catherine & I have been struggling.

Anouk has been complaining of feeling dizzy when she lays down on her pillow at night so as a result we have been propping her up on 3 pillows which has been good for her head but not the most comfortable sleeping position. She has been waking up every night this week complaining of everything under the sun & not wanting to go back to sleep at all! In terms of the walking up we feel that is behavioural but the dizziness is most likely Tumour activity. On the weekend we are going to start a 5 day course of Steroids which will help reduce swelling around the Tumour & that may, for the moment, help the Stability & Dizziness...or it may not!

On Tuesday morning It was back to school & on the way out the door Anouk had to steady herself on the walls as she was walking out the door. That was hard to see because it was very real & in your face. So that set the tone for the rest of the day... shit & we felt & are feeling very sad.

At school Anouk has been using a walking aid which she calls...Mrs Wonder Wheels! The kids have been decorating it & they play trains walking behind her. Anouk doesn't seem to be bothered using it & it appears she is more unsteady in the mornings than the afternoons. She has help in the classroom everyday this week from Grandma & Sharon & the school has been able to secure some funding which will allow Anouk to have support all day at school. This support means that Anouk's class teacher wont have to worry about Anouk's stability & it will help extend the time she can stay at school which she loves going to. Her school have been very supportive through this whole process & we thank them a great deal.

The sadness we are feeling more & more at the moment is not so much about what is going on right now but what wont be going on in the the future. Anouk is a kind & bright girl who would give so much to so many.

Mon 20/2/12...Half term

Last week was half term & we headed for a few days in the country. It was a great week were we spent time with the family & did our best to try & not think too much about what was going on & have a break.

Anouk is still wobbly but stable & it didn't get much worse during the week. She still snores like a trooper & has been complaining of dizziness when going to sleep.

First it was a visit with the cousins to Kate's family farm in the Tamar Valley in Cornwall. It's a beautiful place right next to a river & it's always good news when no-one falls off the Quad bike!

Tree Surfing was next on the agenda & Anouk was well up for the challenge. Kate runs Treesurfiing which is when you get a groin challenging harness attached to you, climb up into the trees & walk between them whilst attached to a safety line at heights of up to 65-70ft...simple!

Anouk was determined to have a go, as was her mother. It was all going well until we go up the 1st tree & she had a look at the wobbly walkway between the 1st 2 tree's & promptly told her father where to stick it! If you are in Cornwall & looking for a blast..at height, as well as Canoeing & Mountain biking then take a look at www.treesurfers.co.uk

Tiring work..!

From Cornwall it was off to our friends Cottage in Ditisham which we have been to a number of times. It's all about crabs in Ditisham & the kids talked a lot of crabs but we think the reality was that the Crabs were on half term as well.

We can also report that Anouk wasn't dropped in the drink by here father!

Anouk will go back to school tomorrow & she will have a helper with her each day. Our friends & family have kindly volunteered to be in the classroom with her & we thank them very much for giving their time. We had a meeting with her school today & they, like us, are determined to make sure that Anouk is given every opportunity to continue at school. Anouk loves going to school & she is a bloody determined 5yo., unlike her Mother who is as of today a 45 yo...Happy Birthday Cafrin.

Sun 12/2/12...a different week to say the least...

A week ago we were saying how things were fairly quiet & not much was happening....how things can change.

It's been a very emotional week as Anouk's balance & speech are starting to be affected. She has been going to school all week but on Tuesday her teacher has asked for some assistance because as Anouk said herself she has been a little..."...wobbly because I have been drinking too much milk mummy.." she hasn't been falling over as such but you can clearly see that there has been a significant change in her balance & speech especially with words 'ch' in them. We have now got a wheelchair she can push herself around in when it comes to that time.

So Grandma went into School for both Thursday & Friday...once a school teacher..always a school teacher. Talking of school we forgot to mention that Anouk has received the head Teachers Award for....." being an excellent role model with behaviour...". This was on her birthday...we have no idea how that happened!

One thing that hasn't changed is her snoring. At one point tonight both Anouk & randy (the dog) were snoring in unison in the bedroom..! Life.

The 2nd half of the week was a roller coaster. Wednesday started with a meeting with our GP, community Nurses & the Palliative team form The Marsden. Eventhough we had a cup of tea it wasn't a party I can assure you. There are a number of practical things to consider with this situation & it's best for us that we get it all sorted now & then we don't have to think about process & organisation in the weeks to come. Our GP will visit Anouk every 2 weeks which means that we don't have to worry about paperwork etc. We also have to agree what we will want Ambulance officers to do & not to do if they are called & what drugs are used when to make sure Anouk is not in any pain. We may not need any drugs or call an Ambulance but at least we know what to do when...well in theory. It's not the easiest think to talk about at times but we are getting such great support from the medical side of the situation & that it's making this shit process much easier.

On Wednesday afternoon it was a trip to the Royal Albert Hall to see Circus de Solei courtesy of Molly's mum Jo...thankyou very much. Neave was amazed by the show but Anouk was asking .." when are we going home.." about half way through the 1st act. She has however been talking about since as we discuss which act was the best!

On Thursday we met with our Village Vicar which was very emotional in terms of talking about a funeral but by the same token a relief to get things sorted. The biggest concern is numbers as we would like to have as many people that would like to come...we'll be having an overflow plan. In a wired way we felt a lot better after this chat before than we did before.

The week ended with a party & sleep over for all of Anouk's class. There were a lots of very load & excited kids, food, excited kids, a disco, a couple of Children's entertainers...the kids loved them.. & more excited kids, who took until about 10pm to go to sleep.

At one point Anouk had to leave the party as it was too load! This great night was organised but the mum's from Anouk's class, I was the only dad there....an experience in it's self! Ladies.... thankyou very much it was very kind if you.

Saturday Neave went to a drama class in London with Billy, & loved it, & Anouk came with daddy to see The Magician's crew.

So it's been a full on week of highs & lows. The more Anouk is affected the harder it gets. Seeing it happen in front you is not easy but that's something we will have to get used to from now on.

5/2/12....A fairly quiet week..

It's been a fairly uneventful week this week & Anouk is on good form. Sometimes we have to keep reminding ourselves of what is going on....the waiting is not good I can assure you.

Monday 30/1/12

She didn't sleep well over the weekend, coughing & snoring like her mother.

Anouk told her teacher she was tired so she came home at lunchtime. In the end she was fine, sat with Granny Sue all afternoon & showed her how to use the iPad! Cheeky Monkey.

It was off to the Doctor Tuesday morning as we thought she may have chest infection. At one point the Doctor, not our usual one, said to Catherine..." what do you think we should do.." prescribe the bloody stuff & we'll see what happens.." I think Catherine said it in a more polite way.

Anouk went to school for the rest of the week & had a swim with Neave & the cousins at The Chase Hospice in Guildford. We have been very lucky to be able to use their facilities as we come under their umbrella eventhough we may never go there depending on how we go caring for Anouk at home.

Saturday was the last 2 shows of the Panto & the girls went to the Matinee with Granny Sue, Pa Fred & Rachel for the 3rd time. Sat night Granny Sue & Pa had a sleep over while Catherine was Witching it up in the Panto & I was playing drums ...not load enough!

Snow at last...!

Today it was sledging for us & many others. There is a great hill just down the road from our house & Anouk was well up for a bit of speed & her Mother was very excited at the idea!

We have noticed that occasionally Anouk has a bit of trouble with her balance & at times her dropped face has increased & her speech a little slurred. Not all the time & we may be looking too hard. Her left eyelid is still droopy & even more so when she is tired at the end of the day.

We are continuing to get on with things as normal as possible. Catherine has had a chat with the Village Priest & this week we meet with our GP & the community Nurse team to start planning for the changes that will happen at some stage.