Putting Neavey to bed

1215 30/09/09

Anouk has had her MRI & as expected....she wasn't impresed on waking up! Luckily Catherin was there to deal with the grummpy one & I was in Bristol!

Lady night before going back to St Georges Anouk was able to put Neavey to bed.






Tonight we will all be back at home together for the first time in nearly 3 weeks. Then it's back to St Georges Thursday afternoon for another general anasthetic for the Hickman line & lumber puncture.

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A day back at home

2230 29/09/09

So it finally happened...a day back at home. Anouk's schedule came through & it ment that she could have the day at home. She was on great form & really enjoyed catching up with people.

After a very good sleep..the day started with a visit to daddy's camp bed....



But because daddy hadn't put a nappy on the night before we had to strip & clean Anouk's bed...





After that it was a quick pack up & the hit the road.

In the afternoon Anouk & Catherine picked Neave up from school...so some normal life. They even had a bath together which made both of them
very happy.



However Catherine & Anouk have gone back into St Georges as her MRI will be 1st thing in the morning with the Lumber puncture & Hickman line being put it on Thursday.

The last time Anouk had general anasthetic for an MRI she took about 2 hours to calm down afterwards...!






So all going well we will be together at home for Friday & the weekend before heading to the Marsden Hospital Monday.

I'd like to be able to show you more pics from today but unfortunately I'm in Bristol for a couple of days...not a happy daddy I can assure you.






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After the Kangeroo arrived

0000 29/9/09

Apologies you will need to read the post below...".aday at home is getting closer.."before this one to get the story..

As Skip had travelled a long way he asked to have a sleep.









Catherine. & Anouk were also a bit tired & needed a snooze as well..

Aunty Ju & Flora came by so it was another chance to go for a walk.



Nurse Sarah gave Anouk a lesson in glove blowing..






So a very good day was had by all. It will be even better if we can go home in thd morning before coming back wednesday afternoon for the 1st general anasthetic for a lumber puncture & inserting the Hickman Line for the chemotherapy. The MRI had yet to be scheduled....in an ideal world early on Friday & home for the weekend before going to the Marsden Hospital in Sutton on Monday.

You have to love how kids keep things simple...Anouk's cousins don't like the name Marsden so there going to call it the...Mars Bar!

A day at home is getting closer

2230 28/09/09

Anouk has been very good day as her recovery gets better & better.

The day started with the usual cuddle with daddy before we headed for the usual latte!






Nurse Destina was off for the rest of the week so she brought in a special handmade dress from her native Guana.






As mum & dad were feeling fairly cocky with the mobile pump setup it was time to hit the road. It all went very well actually. I didn't hit the wrong buttons & Catherine didn't loose the bloody thing!






It was then off to the big play room with Lisa.





And then a very special present arrived. I wasn't too sure exatly what if was at first..


....especially if you see the way Catherine was blowing it up!


...it was a huge Kangaroo all the way from the Whitemanes in Melbourne.



So that was the mornings action....
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Great to get out of the hospital

2345 37/09/09

It was fantastic to get out of the hospital today..even if it was only for 3 hours! Being in a normal household environment felt like a real treat. Anouk agreed to have her 1st bath in 10 days & there was plenty of playing with the cousins. We have been so lucky to have Julia (Catherine's sister) & Ben living so close to the hospital. Nothing much changed when we got back. Catherine headed home to get Anouk's bed ready & Grandma came in for a visit... & the looney bin was still the looney bin!

All going well we here in the morning what the schedule is for Anouk's 2 general anathetics..so as we can hopefully get home in between hand....something we are really really looking forward to.





































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A blog from the bog!

1115 27/09/09

Now on first Reading I understand you thinking I have gone a little mad...& over the
last few weeks it's fair to say...we have!

So yes I am on the toilet at Julia & Bens house,very close to the Hospital, & as I write & the whole family is here.

Anouk slept well with no dramas..apart from the fact that at 0500 nurse Destina couldn't work the new pump we will be using at home... when we can get there.






Anouk then got into dadddy's bed for a chat with granny Sue.




Then it was down for a coffee & then Catherine & Neavey joined us.






I had already sown the seed with Sister Emma about going out for a bit while Anouk was having a break from liquid food. We are working towards a situation where she has max feed during the day &, like us all, nothing overnight..much easier at home etc.

So the good Doc Johnathon came around & said no probs...as you can imagine the packup was bloody quick.

The it was in the car....



Beleive me she is happy....
& then time to feed the baby..


We only have 3 hours but it's very exciting......

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The end of another day

2315 26/09/09






As we get to the end of a day, in a camp bed in a hospital ward listening to alarm bells from liquid food pumps as the Ambulances + police escorts pull into A & E....we think about how Anouk had her stitches pulled out today by nurse Sarah. Well done Sarah...it was done with no magic cream...I assume that stops it from hurting, & there was no carry on from Anouk. There is a reason why I have not posted a pic of the stitches because it's a big cut...but it was sown up bloody well... Sarah I'm not taking anything away from your skills.

Catherine & I also had a meeting with an Oncology nurse who gave us the a low down on the process ahead & the preparation required before the Chemotherapy begins....by talking to her you just know these guys have got their shit together.

In an ideal world we will get Anouk home during & at the end of this week coming. In preparation for this Cath & I have been leading how to administer feeds etc & prescribed drugs. This involves using a pump & checking the process in a precise order. As many of you know Catherine had an issue with order, keys, mobile phones & purses...I was making sure I took all if this in....!

Anouk also got into the swing if things. Helping to push the syringe in.


The pic at the start of this post features a book about sleeping beauty...one of many gifts that Anouk has received from our wonderfully generous friends. She loves if & insists on taking with her everywhere she goes.. including the toilet. It is the loudest book we, & most of this ward, has ever heard....Izzy...we love you!


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2 weeks at St Georges

1830 26/09/09


After 2 weeks at St Georges Hodpital in London, about 40 latte's from M & S, 2 general Anathetics, 1 MRI, an operation & more balloons & cards than you point a pen at.....we have had our 1st full nights sleep without any poo pools or vomitting....!

The day started with Anouk joining me in bed on the floor to go through her photos for the blog. She was very particular on which ones to show.


As usual when dads in charge it's down to the cafe for a latte. Anouk's not allowed to have anything by her mouth yet....well maybe the occassional bit of froth!






Catherine,Neave, Maya & Flora met us there which was very exciting as Nevey hadn't seen Anouk for a number of days.



Who was to push Anouk sround became & hot topic if conversation amongst the kids bur we have to say everyone was very understanding....sort of! Anouk as has been much more up & about...sitting more in bed by herself & dud dome walking as well.



We then had a play at the Ronald Macdonald house until Anouk got a little grummpy & needed some quiet time. Neave & her cousins then went for a swim & we were joined by Claire, Phil, Elenor & Joseph.


It's quiet time now. & yes that means......Hi 5!



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