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.

Happy 5th Birthday Anouk

26/1/2012

After the big part last Saturday.....we had another for Anouk's actual Birthday...which is also Australia Day!

Anouk must have know what was going on as she didn't sleep much during the night. Woke up at god knows what time saying she was scared..came in to bed with us...still scared...joy!

The day then started with Pancakes with Grandma & Granddad coming in for the early shift & ended with a 'small party'..with some of Anouk's mates from school. PA & Granny Sue had arrived from Melbourne on Tuesday but understandably they opted for the late shift.

Anouk went to school for Half a day & was collected buy Uncle Phil who introduced her to Lego. Anouk's version of that game is telling Phil what & where to put the pieces.

Everyone has been extremely generous & Anouk has received a huge amount of presents. Her parents decided it would be a good idea to buy a set of storage drawers so we can store all of the pens, paper & craft bits & pieces. The other part of this present was a whole lot of pens, paper & craft bits which have now completely filled the new storage drawers!....we will now be buying a 2nd set of storage drawers.

Cake wise the catering dept has been working overtime. This is what cake No 1 at the party looked & sounded like:

And for her actual Birthday this is what Cake No 2 looked & sounded like:

Anouk is still going well & thee have been no major signs of anything happening. the only major change has been her right eye lid has looked a bit droopy when she is going to sleep. This was first noticed but he big cousin Maya on Monday night. Maya came down stairs & told Catherine who said it was most likely the Tumour having some effect. Neave was there at this time...took it all in, didn't bat an eye lid & ran off to continue playing!....Kids.

The Panto season has started & Catherine is playing 4 roles...Sailor, Witch, Parrot & 1 head of the Hydra 3 headed monster. I could say a number of things but fro the sake of a harmonious Marriage I will only mention that she didn't need to rehearse the Witch & Hydra roles!

Anouk's aunt Julia is organising for a Quilt to be made for Anouk. These are a few examples but the idea is to make something you would like her to have, not necessarily mimic Picasso.

If anyone would like to get involved please email Julia at: jeheathcote@btinternet.com & she will get you are square.

Catherine & I are basically doing OK...some days good some days not. I was fine forAnouk's Birthday but it hit me more today. Catherine found it a bit difficult yesterday but is finding the Panto great distraction.

We are getting a great amount of support from all our friends & now my parents are here form Melbourne the whole family is together. Today was good day...we shall see what happens tomorrow.

5th Birthday Party

22/1/12

We have had a good week with Anouk which culminated in her 5th birthday Party on Saturday with 50+ kids & adults & then 18 odd family & friends for Lunch on Sunday...!

Her party was held in the village hall with Catherine as the Fairly Godmother, Auntie Julia as an Elf & Izzy as the Witch....a standard day out for the ladies of the Village.

Tigger also made special appearance & on Friday night the girls were taken out by Rachel to get there nails done...very happy with that they were!

There was face painting, food, craft making, food, 2 hairdressers, Chocolate Fondue & a little bit of vino & soup for the older kids...& a bit more food & lots of sweets!

Tomorrow its a full day of school for both girls & Thursday 26th is Anouk's birthday which is also Australia Day. During a recent home grown history lesson Catherine was explaining to the girls that is was the day that Christopher Columbus discovered Australia....bless!

As our babies sleep we would like to say thankyou to everyone who helped make Anouk's party such a memorable time.

A busy weekend of entertainment...

19/1/2012

Last weekend was full of entertainment & this week so far Anouk hasn't been happy about having to leave school just after lunch... when all her friends are doing full days.

Anouk is only dong 2 full days a week, 3 as of next week, so she get a bit pissed off when she has to leave after lunch when all her friends are full time. She probably not as strong as her friends but we are to make it 3 days net week & keep things as normal for as long as we can. The scholl are very supportive & they have benn visited by teh Community Nurses & the guys form the Marsden. So like us tehy have received great support.

Saturday it was at The Magicians studio watching some 'Magic' with Craig Revel Horwood & the Hoff...

As much as Daddy was tempted to to explain how the 'Magic' works he was very restrained & just concentrated on how the shoot the blood stuff !

Sunday it was up to Birmingham to see "Cinderella". Brian Conley (Buttons) was the star of the show & thanks to Brain & Alan the girls were given the VIP treatment all the way. Anouk was brought up on stage towards the end of act 2 to have a chat & sing along with Buttons. Buttons asked what the other 3 kids had got for Christmas...ipads. xbox & new skateboard...Anouk said she got pens! Luckily her mother was the only one visible to the whole auditorium. Later backstage Anouk told Buttons that she also got farting putty....If only she had said that! She did sing "Old MacDonald" very well though & wasn't shy at all.

After the show we had a backstage tour to meet The Fairy Godmother, Cinderella, Charlie the horse & "Basil Brush"...very exciting....click on this link to see what Basil had to say...& what Anouk had to say back!

Just like her mother she's not short of a word!

After the show we caught up with Victoria (one of Richard's 3 English cousins) who lives in Birmingham with her husband Paul & Arthur, Iris & Freda...that was busy!

Our thanks To Alan & Brian Conley for organising a wonderful day full of great memories.

On Tuesday we had a meeting with Stergios, our oncologist which was an opportunity to discuss the scan results which showed that the tumour has grown from 5mm to 8mm in diameter since early December and is to the right of the centre of the Pons in the brain stem. We also discussed the potential course of the disease and confirmed that the best management option for Anouk is for her to be cared for at home by us together with the well coordinated team of clinicians from The Marsden Palliative Care Team, Chase Hospice, our Community Nurses and our GP all of whom we already know and trust, we can call for advice any time of the day or night and already have any medication we may need at home. It was a good chance to say our goodbyes and express our thanks for his help along the way. We can go back to The Marsden whenever we want , but we expect that we will not need to.

On Wednesday Neave had her first session with Ronnie who is the play therapist from The Chase Hospice in Guildford who specialises in working with siblings. We are not allowed to be around so exactly what happens we don't know but there were boxes of themed toys & Neave really enjoyed it & was excited to take part

It's Anouk's Birthday Jan 26 & we are having her party this Saturday in the Ewhurst Village Hall. so we will do an update on Sunday...when we have recovered!

Anouk's Tumour has grown back.

10/1/12

Hello all...

We were hoping to never have to write this blog again but sadly that isn't the case. Anouk's Tumour has grown back for the second time & there are no treatment options.

All of our family, friends & work mates have given us such a huge amount of support that we felt it right to share this news with you.

The 1^st time it grew back was in May 2011 but we are able to have a Cyber Knife treatment which initially got rid of it, but then in early December 2011 it came back again. We have been given about 3 months & the only treatment option is a phase 1 drug trial which we decided to enter as the side effects were going to be minimal & not effect her quality of life. It's a promising drug & it had never been tried on a child of Anouk's age & Tumour type. The best outcome of this trial would have been holding off the growth of the Tumour for a while.

On Tuesday 10th Jan Anouk went in for the 2^nd lot of treatment but her face had started to drop slightly, which is a clear sign that things are happening. It was decided there was no point in continuing the trial.

The following day Anouk had an MRI scan which revealed that the Tumour had grown by 25% since the last scan on Dec 5.

Eventhough this is a huge shock, it's not a surprise. Anouk had a 10% chance of survival 2 years ago & we have been blessed to have had this time with her. Medically everything is in place to deal with the situation & we have been given very good guidance by the local Chase Hospice & The Marsden. At the moment Anouk is fine & we had a great Christmas & New Year. How long until the Tumour starts to impact more in unknown. She will continue to go to school for as long as possible. We are being honest & up front with Neave as required but it is difficult to answer some questions when they come up...to say the least!

So it's now time to take our heads out of the sand & deal with it. We are very worried about Neave...there's no instruction manual for this..but she will be getting special attention from a Play Therapist trained in dealing with siblings in this situation.

Once again thankyou so much for all your support....It will help us get through this.

Catherine & Richard.

More Good News

We had an appointment with our consultant today, to get the results from last weeks MRI and it was good news, the scan is still clear... We are hugely relieved. Things are looking so much more positive than they were one year ago - we are delighted. We will post again soon with some new photos.