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.