2330 25/09/09

What a day....

Some of you maybe familular with the use of Laxitives? Anouk's kicked in at about 0400 this morning with a flood like effect. No need to go into to many details but safe to say...they worked very very well!

On top of that it appears her father had his arse hanging out of the duvet most of the night...the things nurses have to deal with.


It was hospital cafe society first up in the morning & then Anouk had a great time playing very sweetly with Kath & Monty Neve this morning, and caught up with her cousins this afternoon. Anouk was a bit overtired & grumpy this afternoon so her cousins basically ended up walking with her all around the hospital...however as payment they feasted on good old hospital tucker!...one certain way of getting yourself admitted!



Recovery continues to go well. She is still taking photos of anything that moves & is now finally saying hello to the nurses...!


Since Anouk's operation last Thursday we have been waitng for news on what the next stage of treatment will be. Today we met with the paediatric oncologist from the marsden hospital in sutton who confirmed the diagnosis of a rare and fast growing tumour and began to lay out the course of treatment.

It will be treated very aggresively with chemotherapy over the next 6-8 months, the majority if that time in hospital.

It will start next week with two general anaesthetics one for an MRI, lumber puncture and another for insertion of a line into one of her arteries, this will be used to give the chemotherapy. In the meantime, Richard and I are being trained to set up and give the feeds via the tube so that we can take Anouk home for a short time before treatment starts, probably on 5 th Oct. The treatment consists of cycles, with a week of inpatient chemotherapy followed by a period of Anouk being unwell, then improve, and so it goes on. The course of treatment last for seven months.

We are feeling absolutely exhausted after a draining day of information overload, but by the same token very releived that treatment can begin. We are under no illusion that the next 6-8 months will be very tough on Anouk & our family....it will be full if up & downs.

The most important aspect of this whole situation is to be positive & strong.....that's what will drive us to make our beautiful Anouk healthy again.



Again...thankyou much to everyone for all your love & support. We have needed it & will continue to do so.

2230 24/09/09

"...I can do it..."


Anouk has had a great day today and has rewarded us with a generous dose of noodleesque moments, giving out orders, spontaneously giggling, obsesively packing small plastic bags with various treasures and being generous with kisses and cuddles, and there were more bonuses, no strops, minimal vomit and enough toilet action to keep the nurses happy.



She walked a few wobbly steps and is up to her full quota of tube feed (75ml hr) which means she will be putting on some weight ready for the battle ahead.



She, of course is loving the gifts which people have been so thoughtful about, she insisted on putting her princess dress straight away and loved the ballons, she watches them drift when she has a 'vacant moment' - something I can relate to, our corner of the ward is looking very colourful.










Anouk was delighted to see Katie who painted her hands and sang her off to sleep. We had lots of other lovely visitors who help keep us sane and amused.

What a beautiful day it was, Anouk insisted on several 'walks' and we sat outside and soaked up some rays.






So a fairly busy day that also included a visit from the local window cleaner.....very exciting!



Taking photos has also become Anouk's favorite passtime so by popular demand we will publish some of the better ones in the morning.



Each day is bring improvement & as usual it finished with a good dose of....Hi 5!

To everyone...thankyou so
much for your thoughts & support...we couldn't do it with out you.

Posted from Richard's iPhone

Good morning London...

0915 24/09/09



Anouk had a good sleep last night. Apart from a slight blocked nose & the sodium/glucose tube coming out causing minor flood.....it was good night.

The liquid food was stopped at 0400 & eventhough I moved her this morning there has been no tiger parking.

Hi 5 is still the order if the day.



For the 2nd day the tv's are not working. I made a fairly pleasant call yersterday but I don't that will be the case today. Morons.

1900 23/09/09

After the chucking epidodes this morning the day setteled into a good pattern. Sitting on mum was the prefered location as was playing with some finger puppets...& getting dressed in real clothes for the 1st time in nealy a week.







She was also very happy to get back to usual duties like tickling her fathers feet.


As her father is taking a "few" photos...Anouk has decided this is something we can all play at...regardless of what is going on around her!



She also found time to chat to Grandma, Pa fred & granny Sue.



She needed to get a new Cannula put in which was a bit painful but she was very brave.


After which we took her for a walk in the buggy complete with trailing battery powered liquid food pump. It was all going well until she was being lifted back onto the bed. Anouk kept going but the food tube didn't! Safe to say she needed a new tube fed into her tummy via her nose...& her father was not present during this whole time!

We had a visit from an Oncology nurse who layed out what the various posibilities are once the Oncology report is presented & the surgeon & the Oncology team have met. We hope this will be this Friday & we may have some news by late Friday or early Monday.

Tommorow morning her 4 hr break from food will be from 0400 so she wakes up with an empty stomach. Hopefully this does the trick & she dosen't park a tiger. She also has a motion sickness patch on tonight.

There were also 2 wee's in the toilet...stop the press & hold the front page!

At 2110 tonight she had a small vomitt which is not usual..but she has fallen asleep shortly afterwards.


It's aunty Ju again...... Well.... What has today brought. From what I see, we have daily improvements from anouk who was more animated and giggly when flora and I came to visit today, we played shops which Anouk enjoyed.... She is soaking up high 5 as I write, the words and movements of which she will know by heart before too long.... Hopefully she won't be wearing the outfits!
Words do not sufficiently describe how brilliant Cath and Rich are, I cannot sing their praises enough.
Richard continues with his inappropriate humour and has added crude t-shirt designs to his repertoire. The nurses continue to be perplexed......






Posted from Richard's iPhone

Another good night

1120 23/09/09


We had a good night in the looney bin..sorry the "ward". Anouk slept very well with only her liquid food going & nothing else. So only the chance of 1 alarm going off instead of 4....& with 7 beds in the ward there is always a chance if the alarm overture being played by the paediatric orchestra!
So good sleep & then at 0400 Destina (nurse) discovered that she had broken the nappy banks with a big wee & had attempted to rehydrate the bloody bed. So it was wakey wakey time & hey while were in the mood let's not only change the nappy & bed sheets but why not give get a full body wash as well...it's only 0400 what else would you want to do at that time of the morning? However it did mean that daddy got a cuddle, so there was some very good compensation.




About 0830 she woke up & putt get hand through the railing & crabbed mine & we had a daddy daughter chat. So it was all going well & this father was rather excited at the start to the day. I asked get if she wanted to sit up & cuddle me? ...no probs Anouk said & up we went.. all going well here I thought. Mum turns up we move Anouk to sit opposite me & then....she gets that loom on her face...& you guessed it..out if came..not a huge chuck but enough I can assure you. Luckily mum was on hand to catch it all!.....well done mum.



The sickness is only happening in the mornings so the theory is to stop the feeds very early in the morning so as she wakes up with an empty..ish tummy & not badly respond to movement from an over excited father! We are looking at giving her a motion sickness patch which had proved very succesful in these circumstances.

At the moment she's a bit drousy bit at times very alert...ups & downs!



This is Lucy, who like atll the nurses, has been fantastic.



Posted from Richard's iPhone

A much better day today

22/09/09.... 23/9....0010

Anouk had a much better day today with her liquid food staying in & no vomiting...tiger parking. A nice change as Monday just did nothing for the parental confidence or ward aroma!

She started off the day with a smile but quiet floppy up until lunch ish time then she picked up & got into the swing of ward life...stick the stickers all over the place...whatever keeps you happy!

The surgeon came around a reiterated that he was happy with how the op went, the way she was recovering & the fact that even though we don't have the pathology report he still believes that the Tumor is fairly aggresive. So as you can imagine we are hanging out for this f.....ing report so as we can so see what the plan of action is ongoing...dosen't look like that's going to happen until the end of this week or start of next...patience is a virtue!

Visitor report: Izzy was here this morning....don't take it to heart Izzy she's been looking at everyone like that for the last week! In the afternoon Lucy, Angus, Ellis & Rory were her & they got to se her in active mode..as such...

The speech therapist also came along as was basically happy & but believes here throat is still inflamed form the op & as a result will leave it a few days before having another look re solids heading south to tummyville.

Parent report...Mother OK Father....so so...

but today was a good day.

I've had a good sleep

0930 22/09/09


Anouk has woken up, smiling, after a good 12hrs, which is how long she normally sleeps. No issues during the night although she did get a bit pissed off when at 0500 I changed her nappy to discover poo no 2 & a wee! Not too sure why I went to change it..just started when Destina (nurse) suggested it...could have waited actually. We also moved her head around so she didn't get a stiff neck. A little floppy at the moment but she is happy to throw the teddy off the bed! So far no reactions to liquid food going in overnight at 40ml per hour. She is still on the other liquids which help her to keep hydrated. Catherine's on duty today & we are looking forward to seeing Izzy, Lucy & Rory. I'll be picking Neavey up from school for a possible visit to little sister.

Posted from Richard's iPhone