We are back at home..

After a record breaking 14 days we are back at home...! Anouk has got through the 5th cycle well & as a result she will have the next 10..ish days at home before going back into the Marsbar on Feb 8 for an MRI & then Feb 10 to start High Dose!

Al those physios out there will recognise the bubble PEP - Anouks has had a cough for several weeks now - it hasn't come to much - perhaps thanks to the bubble volcano - Neave and Anouk had fun with it anyway.

You may have noticed that Anouk looks a bit thin..bloody under statement really.. but apparently not unusual for the type of chemo she has been on ... we will doing our best to get her fattened up in the next 10 days.

She had a great birthday at The Royal Surrey & the team there were fantastic.

Below are a few pics from the last week & we will update more over the weekend.

A few friends have put Anouk's name forward to the Make a Wish foundation. Catherine asked who in the world she would most like to see...her unprompted spontaneous answer was...Granny Sue & Pa. So you had better book some flights!

Happy Birthday nooky!

1900 27/1/10

Anouk celebrated her 3rd birthday yesterday....in The Royal Surrey in Guildford. She had lots of visitors & 2 cakes!

Her temperature started rising Monday morning so Catherine & her went in first thing. So far though she has been going well with no major sickness or temp spikes. If it stays that way for the next 24hrs without antibiotics & her bloods levels start to come up, there is a chance that she will be home for the weekend. This would give us a good ten days before she is re admitted for High Dose. There will be the normal hearing & Kidney function tests along the way.

Because it's a general ward & we are trying to avoid any infections, it's an isolation situation at The Royal Surrey & Anouk doesn't go out out of the room. Catherine can go out but it's a very limiting situation overall & there's no WIFI like at the Marsbar which in the circumstances very frustrating when you want to catch up with life at night!

We do have a sense that there is a small light at the end of this tunnel. Anouk has been amazing & so brave. We really want this to be over as soon as possible but patience is the name of the game at the moment. The next 2 phases, high dose & Radiation, are critical to the whole process, but they can also be the most taxing for her.

We've had 3 days at home in the middle of a cycle!

2200 24/1/10

It's a bit weird having this time at home in the middle of a cycle...but bloody nice!

We we got out of the Marsden Thursday last week at about 6pm. As per Christmas New Year they needed the beds & the snow stuffed a whole lot of plans up. Since Anouk's chemo drugs had gone in, & she was running all over the place, they decided to break with tradition & send us home until her temperature hits 38deg , & doesn't come down a short time, & then we head to the Royal Surrey in Guildford which is about 20mins away.

Well it's Sunday night & we have had three really good days at home & it makes you wonder if we could have had more of these breaks considering she has been handling this fairly well! Catherine did take her up to the school to pick up Neave on Friday afternoon but generally we have been keeping her away from crowds & anyone who feels crook. Tomorrow is day 10 & on past form Anouk's temp will rise & off we go.

It was Cousin Solly's 11th birthday on Saturday so it was up to Grandma & Grandpas for a big breakfast & dress ups. Saturday afternoon was the Ewhurst players panto which we decided not to take her along to. We have had to take her in the The Royal Surrey on both days for an infusion of GCSF..a drug that promotes white cell growth that she needs to have for 4 days after each lot of chemo.

Nights have been very low key however she was very keen to melt her own marsh mellows. This morning it was up to the allotment for some picking & cleaning up before a slow cooked Roast lamb lunch.

So it's a waiting game now until her temp hits 38. Schedule wise we will be having the next MRI at the Marsden on Mon Feb 8 & then she will be admitted on Feb 10 to start the High 'napalm' Dose. The drugs will go in for 8 days instead of the normal 4 & her stem cells have been booked to be put back in on Feb 18. We expect to spend anywhere from 4-6 wks in the Marsden for this lot...but hopefully it will be the end of Chemo!

Phil and the Brighton Marathon = madness for a good cause

Phil Thomas, a friend of ours is running the Brighton Marathon - he is clearly insane - but he has decided to support The Royal Marsden Cancer Campaign - this is a campaign to raise money for a new children's and adolescent unit which will replace the one Anouk is being treated in - it will provide better facilities for in and outpatients and for research - the plans look great. Here is the link for his just giving website:

http://www.justgiving.com/Phil-Thomas0

Another trip to the shop, another toy involving getting Mum / Dad to run around the ward catching / chasing balls

Anouk showing Claudia her blog, Claudia showing Anouk her facebook page...

Anouk has tolerated this round of chemo really well and so we have been allowed home for a few days - we expect that she will get a temperature and be admitted to the Royal Surrey, probably on Monday but until then it is great to all be under the same roof.

Day 4 - a good day

The chemo has all been given and Anouk is attached to fluids for the next couple of days until the last lot of drugs has cleared her system, she is doing well.

We have had a good day today, i took over from Richard last night and we had a lovely visit from Uncle David - Anouk appreciated his cuddles, and eventually fell asleep. Today Claire visited and Anouk was very happy to spend time with her to the extent that she nagged me into disappearing for a shower and leaving Claire and her to play in peace. Anouk has been keen to walk outside today and was determined to find snow, i was quite relieved initially to find a semi melted snowman, as Anouk is - quite determined - to get what she wants - however the relief wore off quite quickly because Anouk then insisted that we kept going outside to get handfuls of snow to bring back inside and throw at the nurses... fortunately they were tolerant and she was then kept amused for quite a while with lots of paper towel, cleaning the melted snow from the hospital floor.

Claire's husband Phil is running the Brighton Marathon and has chosen to raise money for the appeal for a new children and adolescent unit here at the Marsden - he will have an on line page at justgiving.com but it does not appear to be up and running yet, the Marsden provides treatment for cancer for adults and children and also has a huge research facility and if anyone does want to give to a charity, this is a good one, they will channel the money to whichever arm of their work you would like to support, ie the new building or children's cancer research on general or research into children's brain tumours.

Anouk's "big girl" friend Claudia arrived to restart her chemo this afternoon and we sat around the table in the playroom with the school teachers and made hot air balloons - Anouk enjoyed it. She is asleep now and i am waiting for my gorgeous sister Julia to arrive to give me cuddles...

Cycle 5 day 3...definately not boring!

2300 17/1/09

Day 3 got off to a very good start due to the fact that Anouk slept nearly 12 hours & I didn't need to get up to change any blown out nappies...Nurse Patsy was right on the ball.

Anouks not eating much as the chemo tends to change her habits & tastes. But today it was cereal day & she nibbled on bran flakes or some time as long as it didn't have any nuts...sultanas are OK!

Cafe society was in today & Anouk asked for a 'baby chino'...music to the ears a of coffee loving father!

Catherine & Neavey also came in & the 2 played very well together..especially in the bath with the 50ml syringes! As you can see form the pic Anouk has her NG tube in whilst they are in the bath. The firing of water, & we suspect drinking as well, got the best of Anouk & she was sick. So we got her out & she was sick again.

This pic shows her without the NG tube & Catherine peeling off the dressing. Yes she blew out her tube & had to have a new one.

This is what a tube looks like after 2-3 months inside your tummy!

We had also intended to explain the bloods situation & what they all mean. Catherine went to great lengths this afternoon to type it all out. It was very concise & informative...& I just deleted the whole thing! Woops.

Cycle 5 day 2....

2200 16/1/10

Day 2 of cycle 5 has been & gone with no major surprises. Anouk had a good nights sleep & no sickness, eventhough the chemo went in over night. What we have found over the last few cycles is that it take about 24hrs for the drugs to cause a reaction. No doubt there will be some tiger parking action tonight & in anticipation we have lowered her liquid food intake to 20ml per hour...the snack rate!

Today it was the ususal routine of of walks around the hospital & being dragged to the cafe so as daddy can have a coffee. Catherine & Neave came in for most of the afternoon which was great as it allowed me to have a shower & it kept Anouk awake late in the afternoon when she likes to have a nap. The problem with a nap that is she doesn't then go back to sleep until about 10 or 11 in the evening!!...not good. So tonight whilst watching Barbie & the Musketeers, hooray something different, she dropped off into a deep snoring sleep just before 7...on my bed! So this meant that at some point a move would be required.

Whatever chemo drug it was tonight went in early for a short amount of time followed by a flush. The flush is designed to 'flush' away the residue crap that is left behind from the drugs going in & get rid of that crap out of the blood stream. Once the flush had finished we moved Anouk which was the trigger for some sickness....luckily my hand was close by...not the sick bowls!!

Blood levels....each day Anouk has her 'bloods' taken & they are broken down into a number of catagories. In the next post I'm going to list her levels the day before the drugs wen't in & from then on so as you can see the progression & what that means...why not do it now? can't find a nurse anywhere.

She is now sleeping very well & will hopefully do so for the rest of the night....dream on!