We have moved!

2300 29/12/09

As of about 6.30pm tonight we are now residents of The Royal Surrey Hospital in Guildford or hosdibal..as Anouk calls them.

The Marsbar was very full & needed beds for patients. As Anouk had finished her Chemo for this cycle it was decided to move her to the Royal Surrey for the infecton & recovery period. Location wise this is good as it is closer to home but it's a general ward, that deals with the effects of Chemo, but there is more chance of an infection when she comes out of her room. So it looks like for the next 9ish days Anouk could be confined to her small room ...not good!

She is still coping well this cycle. There hasn't been any temperature spikes yet & she is on very good form. Anouk is continuing to get food via her nose tube overnight but is eating a lot more normally during the day....depending on how she is feeling. Swallowing of food is no problem but she does still at times struggle a little with fluids.

Based on the last 3 cycles...if all goes we will hopefully be back at home for a few days next Wednesday or Thursday.

Christmas day pics....

Merry Christmas

2230 25/12/09

We have had a great Christmas Day....eventhough it was in in a Hospital!

It all got going at 3.30am when Neavey woke up running around with her stocking full of presents. It's still dark here up to about 0730 - 8am so I thought it must be time to get up...then we had a look at the time! There wasn't much sleep after that. Pump alarms went off, Neave kept waking every hour or so & Anouk woke when her nappie was changed....great fun.

We all slept in the same room last night as we are currently in a 3 bed ward with no one else..very handy since there were 15 of us towards the end of the day.

Presents , presents & more presents is the best way to describe the day. Opening ceremonies were broken into 4 parts...we all needed a break after a while. Safe to say the kids have been thoroughly spoilt but our friends & family. A Roast Turkey lunch was put on in the cafe by the NHS which was very nice.

After lunch the rest of the family turned up & it was chaos for a few hour but the kids had a great time & Anouk was well looked after by her cousins & friend whilst her parents got into the Carva!

Father Christmas also made an appearance as he had found some "left over" presents in his sack he forgot to deliver last night. I'd like to show you the pics but the battery has ru' out on the camera & we don't have the charger with us!

A huge bonus with a day like this is that Anouk & Neave are totally buggered early & have both gone to sleep here in the ward by 8.30pm....woo hoo!

Anouk has also had her 2nd day & night with any vomiting which is better that previous cycles...now that I have said that she will park a tiger like there's no tomorrow for the next 8 hours!

So not the best place to celebrate Christmas but we did have a good time today & we could share with most of the family.

Merry Christmas.

Christmas at the Marsbar.....

1900 Wed 23/12/09

So here we are 3 days into the 4th out of 5 Cycles of Chemo. After having a wonderful 4 ish days at home we returned to the Marsden Monday afternoon this week & started chemo that night.

The 1st night was very good with Anouk sleeping for 12 hrs & no sickness...& for a moment I was thinking this is looking good. Last night the norm kicked in....sleep at about 8 - 8.30pm waking at 3 ish needing a cuddle..ie I feel sick..& then the 4 am vomit & a complete bed wet after the small pull up couldn't handle the amount of fluid she is getting in conjunction with the drugs. So after a bedding change it was back to sleep & then up at about 8am.

Life in the Marsden has returned to normal.

As usual we have been blessed with lots of visitors over the last couple of days & our girls are being spoilt rotten on the present front. Sacha, Duncan, Lexie & Angus..our extended family from Melbourne have been in, Ben & the cousins drove their new mini bus in today & Nic, Richard, Bryn, Nye & Dylan dropped around this afternoon. Ellen has been coming around after finishing work in the Medical Day unit.

We also had a very good meeting today with Stergios who is the boss. As per the result of the last MRI we are, at this stage, winning this battle & he believes that we are going to win. Anouk has continued to handle the chemo well & on the law of averages she should have had a few visits to PICU by now.

The program from now on is as follows. Anouk will complete the 5 cycles of Chemo treatment & then have another MRI. She will then go straight into a High Dose cycle of Chemo. This is as it suggests & higher dose of what she is getting, no new drugs as such but a lot more of what she currently gets. A fry up basically that will potentially make her more sick & also trash her bone marrow which is why she had the Stem Cell harvesting a while ago so as she can have a transplant after the drugs have finished. This means that she will have a longer period of her immune system being shot as it takes a while for the stems cells to start growing after they have been transplanted.

She will then have a period of recovery so she is as strong as she can be before starting Radiation treatment. Radiation will be 5 days a week for 6 weeks & she will have a general anesthetic every day as an out patient. The setup for the Radiation is critical. Her Tumor is at the back of her brain which is better than at the front but as with all the treatment she is receiving, there are risks involved but these are outweighed by the long term goal...getting rid of the bastard.

On her current schedule Anouk will have High Dose chemo during Feb..ish, March...ish recovering & then starting Radiation in April finishing mid may. Then a good 4 + weeks after radiation has finished she will have an MRI & hopefully all this treatment has worked enough for Anouk to be let free but scanned every 3 months. Surgery is still an option if things were to change & it was deemed appropriate.

Until then it's life as per usual here at the Marsbar. Anouk is handling the chemo well so far & the biggest drama has been that her NG (Nasal Gastric) tube became blocked & we nearly had to pull the blocked one out & put a new one in. The job of unblocking was delegated down 3 nurses to the new one on the ward as no one wanted the job of putting a new one in. Luckily it finally became unblocked & we all felt much at ease!!! Anouk fell asleep at 5 this afternoon which means she will be awake very soon & up to all hours as a result!

To all our wonderful friends & family thankyou so much for all your love & support & we wish you all a Merry Christmas & a happy 2010.

We have had a great few days at home, we left the Mars Bar on Thursday, Anouk was not happy when she realised we were not going straight home and she threw an almighty strop all the way from Dorking to Guildford which continued when we arrived at the Royal Surrey for her hearing test, a very patient Audiologist managed to complete a hearing assessment, her hearing has not deteriorated since her last test, which is good news. Our great friends Sacha and Duncan arrived on Wednesday and brought the snow with them, the girls have had a fantastic time, sledging, skating and rolling in the snow. I have caught up with friends over two fun drinks parties. We had our Christmas lunch at Mum and Dads today, the house looked beautiful and we had a superb day, lovely food, a long walk in the snow and family games. We are probably back to the Mars Bar tomorrow, Anouk will have a blood test at home at 9.00 am and if the results are OK we will be in tomorrow afternoon.

Home Tomorrow

Anouk has had a good day, apart from being over tired, after a big strop in the wee small hours. She is now asleep at 5.00pm, lets hope she sleeps until morning!? And the good news is... we are going home tomorrow. Anouk has a hearing assessment at the Royal Surrey in the morning and then home. She may not be ready to start her new course of chemo on Monday as planned as her blood counts are still quite low, she will have a platelet and blood transfusion this evening which will boost her but we also need her body to start producing more bloody bits on its own. We had more celebrity visitors today - this time it was scooby doo, bugs bunny and yogi bear, and this time Anouk was star struck, especially by Bugs she followed him around and was quite put out when they took short breaks for scooby snacks. She has had enough of the camera and so no pics today i'm afraid.

Home is in Sight

The Mars Bar is a chocoholics delight, we have a chocolate house...

Anouk is recovering from her last bout of chemo - she has not had a temperature for two days now and her immunity is improving. We have been told that she will need to be on antibiotics until Thursday evening and then, provided she remains well, we will be able to go home.

Whilst Anouk's body is doing what it does, Anouk continues to do her thing around the Mars Bar and to entertain and be entertained.

Ferne Cotton visited today and got some advise from Anouk about what to put draw on her Christmas cards - she was very easy going and chatty - as was Anouk.

Someone was very pleased to see her Daddy

Steve visited with fantastic gifts, including a book with a built in 'piano' which Anouk demanded at 11.00pm last night... She loved the Hello Kitty Duplo - thanks Steve and Annaliese

Neave had a sleep over on Saturday night and Nicola and Nye came to visit on Sunday.

Presents for all...

The singing and dancing Santa has become the latest entertainment -

Daddy is home

Richard arrived at the Mars Bar at 8.30 this morning having had a good nights sleep thanks to an upgrade to business class huge thanks to good friends in high places... it is great to see him, but it is hard for him and for Fred and Sue being so far away through all of this. Fred's treatment has started and he is doing well with minimal side effects so far.

Anouk is also quite well within herself, she had a couple of rough days but is much more herself now, we are just waiting for her temperature to come down, it is well controlled on paracetamol but when that wears of, it spikes up to 39 degrees again, she is on antibiotics but we suspect she has a viral infection. Unfortunately we have to wait 48 hours after her last high temp before she can come off of the antibiotics and go home, so we are aiming for Thursday morning - depending on how today goes.

The Mars Bar is not such a bad place to be at this time of year, there is plenty going on for Anouk and more presents... We are all looking forward to Sacha and Duncan and family ariving from Aus on Wednesday and to the Christmas holidays.

Party Time

Now Richard has been away for almost a week, i felt it was time to crank up a gear with this blogging business and have finally worked out how to load pictures - yee hee.

Anouk is not so well today, this is normal for this stage in her cycle, she has a temperature and has started antibiotics but is still chatting and interested in what is going on around her. It is now just a matter of waiting until her blood counts pick up and hoping that she does not get any major infections.

She and i have had quite a social week, we have used and abused our amazing friends - and roped them into sitting with Anouk whilst i gad about. Jo, Izzy, Sharon, Alison and Mum have all done their bits and really did not need any roping in -they were wonderfully willing volunteers - huge thanks to them. I had a days Christmas shopping with Ellen who intuitively sensed that left to my own devises i would never find my way to Wimbledon and so drove me there and steered me around the shops attempting to provide some kind of focus to my meanderings - quite successfully. I had a great day yesterday seeing Neave at gymnastics and in her school nativity, she made a gorgeous and quite angelic angel.

We have been skyping Richard daily and he is having a good time, catching up with our Ausy family and friends in a relaxed way.

The Mars Bar Party, spot the CBeebies visitor in the back, and all the play specialists as 'tacky fairies".
We had a visit today from Kathryn and Victoria from Friends Day Nursery which Anouk went to for a few months last year. They bought her lots of bling and crafty things - huge thanks to everyone at the nursery.
Here he is - Syd from CBeebies - I was very excited to see him - Anouk was much more interested in Father Christmas and the clown doctors.
And there was lots of food, Anouk didn't appreciate the buffet concept and so was keen to sit up at the table, and help herself to lots of food - which she then..... looked at....

She was on great form for the party, dancing and playing with Dr Gee Hee and Dr Kanga - and gues where Dr Kanga is from
Anouk did very well with the cast offs from the tacky fairies and has worn the skirt ever since including the last two nights in bed
Anouk loves Jenny the ward receptionist - i think that she quite likes Anouk too...

All dressed up and lets go - to the Mars Bar for a party...
Our version of home cinema...