VERY GOOD NEWS!

1830 30/11/09

We have just received the best news of our journey so far. Our consultant Stergious Zacharoulos arrived in Anouk's room smiling with a big thumbs up, the MRI is considerably improved from post op with only a tiny dot, which he is unsure the significance of - he is unsure if it is tumour or not - but what we do now know is that the tumour is not growing. The changes which looked like tumour on the post op MRI were probably mainly swelling or blood resulting from the surgery and have now - disappeared...

We have had a very anxious wait over the weekend as Anouk had a hearing assessment on Friday which identified that she is profoundly deaf in her right ear - the good news is that she is completely compensating with her left and so her overall hearing is "normal". We thought that this may be a new problem and so were very concerned that the tumour had grown - now it is clear that the deafness is as a result of the initial tumour and probably due to the acoustic nerve being part of the collateral damage of the initial tumour removal.

Father has learnt not to hold the phone to her right ear just after explaining to someone that she can't hear out of it!

We are now back in The Marsden & by no means out of the woods. Anouk will continue on the same regime with the third cycle starting tonight and a further two after this one. Anouk will then have 'high dose' chemo and this will all be followed by radiotherapy next year. We expect to be in the Mars Bar for about 18 days from today. This is cycle 3 of 5 & she will have another MRI after the 4 cycle..in about 6 weeks..ish. What is high dose..a shit load of chemo designed to knock it on the head...it's not a fun time though!

Also Anouk is eating far more than she has done over the past 3 months. Currently watching The Wiggles & munching on chrisps (UK for chips) & Humas dip. The extra bonus thats it's the Wiggles & not HI 5!

Despite the underlying concerns, Anouk and Neave continue to delight us and keep us smiling. We have managed some normal life activities with our lovely friends over the past couple of weeks - out for dinner, coffee, Sunday lunch, lots of play dates with Anouk who is on the greatest of form. Neave has been a bit wobbly but not at all surprising especially given we went out on Saturday to treat her and spend her hard earned pocket money and came back with new toys for both of them and a beautiful pair of 'shiny' new shoes for ...... Anouk - whoops. Neave has been promised new - shiny school shoes at Christmas! Despite what must be an extremely difficult time for her she is absolutely delightful with Anouk, she can find the buttons we can't to nip those two year old strops in the bud, and is thoughtful and considerate with her - the majority of the time.

We now begon a period separation for a few weeks. I am heading to Bristol tonight for work. Some of you will know that my Father (Fred) was diagnosed with Pancreatic cancer around the same time we found out about Anouk. We all have family solidarity but going out in sympathy is this way is taking things to the extreme dad! Fred starts his treatment of Chemo & Radiation this Wednesday & we all send send much love to PA Fred..also known as Fredo frog & Lord Fred....it's a long story!

This is what she was hooked up to for the Stem Cell harvesting.

Once again we would like to thank all of our friends & family who have supported us through this whole shitty time...the only way to describe it. Your thoughts & love have made a world of difference & kept us together...thankyou so much.

It's been a busy 10 days.....

2200 25/11/09

Apologies for the lack of updates, but It's been a very busy week since Anouk came home Monday 16/11 after finishing her 2nd cycle of Chemo. Thankyou to everyone who came to visit...it helps make us feel normal again!

Monday evening 16/11 & Tues 17/11 were fairly uneventful, aside from the fact that Anouk has decided that her sleep schedule will now be 9pm to 6am...great!

Wednesday 18/11 was Kidney function testing morning back at the Marsbar & all is in order there. It was then back home for Wednesday afternoon picking Neave up from Ballet etc.

There was a little bit of excitement at about 0300 Thursday morning when Anouk started to vomit & I thought I had my finger on her Nasal tube...but no...so it came out most of the way & we had to pull it completely out & cut it off. The next morning the Community nurser came first thing & had the job of inserting a new one....Anouk isn't a great fan AT ALL of this process...!

Then we got a phone call that morning from the Marsbar to say that one of the mothers on the ward had got or been in contact with someone who had Chicken Pox & as a result all the patients had to be treated, in our case a trip to the local hospital for a rather painful jab in Anouk's bum!

Friday the Community nurse was back to start the GCSF..not too sure what this stands for but...it's a drug that stimulates the stem cells in the blood stream. This continued on both Saturday & Sunday at the local hospital for about an hour per visit.

Shock horror....on Saturday night we had friends around for dinner...socialising...it was great, a sense of normal life!

Catherine & Anouk went back into the Marsbar Monday afternoon this week in preparation for Tuesdays Stem cell harvesting. This involved a general anaesthetic at 11am to have a tube inserted into her groin to get the blood from. Amazingly Anouk woke up very well from the anaesthetic & there was very little drama...a stark contrast to the last 3! Blood was taken for 4 hours Tuesday afternoon & as her blood count was high they only needed to do 1 session to get enough good cells to store.

Now Anouk is back at home until Monday next week for the MRI which is booked in for 4pm. We will then meet with the lead consultant...Stergios the Greek..to talk about the MRI & how things will proceed from there. In theory the 3rd cycle will start that night & we roll on, but we will have to see what the MRI shows.

Anouk has been on fantastic from during this period at home & if it wasn't for a tube in her nose & a lack of hair you wouldn't think there was anything wrong. She is eating more & more mashed up food which is great & has been vomitting less. She has been taking anti sickness drugs as we are trying to get as much liquid food into her a s possible. She has now moved to 1.5 calories per ml feed which means less time on the pump per day & she has been putting on weight as well.

It does look like that we will be in Hospital for Christmas...ho ho ho!

Currently I'm away for the week but we will all be together for the weekend. So it's not the ideal scenario & we are all getting a little anxious about the MRI scan.

We are all at home for a few days...woo hoo

1500 18/11/09

Anouk came out of the Marsbar late Monday night 16/11 & will be at home until Monday next week 23/11.

In general she has handled the 2nd cycle of Chemo better than the 1st. No infections & as a result no high temps. Highest was about 38.5 deg which is fine. Her blood levels also recovered to an acceptable level quickly which was great. The hearing in one ear is possibly down a bit but that's always a possibility & will need to be checked out soon.

So all in all good news & it is great to get back to some 'normal' life. It's amazing how special a normal life can feel when you are in a situation like this. Anouk is full of beans & is sleeping fairly well..until the bloody pump starts beeping & we need to do a food bag change. As of wed night she will go onto a high energy feed which will mean she will only have to get through 2 bags a day instead of 3. The good news is that she is eating more mashed up food & drinking on a regular basis. We are encouraging this as much as possible so she doesn't forget how to swallow.

Today it was back to the marsbar for a Kidney function test & then home for the rest of the week. Then back in again for the evening of Mon 23/11 when she will have a general anaesthetic for the stem cell harvesting. All going well she will be back out by Wed 25/22 & then home for the rest of that week before back in for the MRI on Mon 30/11.

No temps or infections...so far!

2300 11/11/09

Well we have been expecting Anouk to head south over the past few days but it hasn't happened. This time around she is so far coping with the after effects of the chemo. No infections & as a result no major Temperature spikes.....so far!

We have been getting to know the Hospital fairly well..over & over & over again. The click clack shoes have become somewhat of a talking point around here so we get the feeling she is trying to milk it a bit.

However there is now stiff competition to the click clack's...the New York China Town happy shoes. Claire was in NY recently & bought back these special shoes. The idea is that you place a heart in one of the shoes, say a special Chinese spell that ends in the word Toyota!..or is that a Japanese spell..anyway the result is that they make you happy & when you get sad you replace the heart with a new one...if only life was THAT simple.

Some things however haven't changed...an average of 2 mins per activity, lots of walks & lots of HI 5, Peppa Pig & now High School Musical - The Concert.

There is every chance that Anouk will continue in the vein & then by the weekend her bloods could start to improve...TBC.

2230 8/11/09

It's been avery busy weekend here at the Marsbar. Friday was all about Neavey & her birthday & sat was all about the fact that for the 1st time in nearly 2 months we left Anouk in the hands of others. They being very experienced others in Grandma & Auntie Ju Ju.

This enabled Catherine & I to get back to the village hall for Neave's party. How did it go? well in terms of Anouk...at one point we got a text from Auntie Ju Ju saying..." Grandma & Anouk were tap dancing"...so no major problems there & in terms of Neave's party...40 kids, a few dads standing around in amazement, mum gossiping, lots of ABBA & a shed load of sugar! The kids were happy.

Back to Anouk......Cycle wise we are coming to the end of the calm before the high temperature/infection storm. Anouk is still handling the drugs very well & has only been sick when the anti sickness drugs wear off...on the dot at 0630 & 1830. She has been sleeping well & as active as ever. Peppa Pig has hit the top of the chats, however Hi 5 (US version) is still highly requested. Her temperature is up & down at the moment. It had gone up to 38.2 today but after some Calpol, Uk's version of Panadol for Kids, it dropped back down to 35.5.

Caroline, Murray, Ellen & Jo came in today & Anouk had to show off her mac laptop skills & run through all the party pics.

Monday is day 10 which is the same day last cycle that she started to get temp spikes as a result of an infection & we are expecting that to happen any time now.

The 2nd cycle drugs are finished...

2200 6/11/09

Apologies for the long break between blog drinks but the main blogger had to go to work for a few days & the apprentice..well...she waited until I got back.

Over the past 3- 4 days Anouk has been on absolutely fantastic form, a delight to be around. Today she was a Little more sub duded & it looks like she may be heading south a bit earlier than last cycle.

On a regular basis we spend our daily budget at the league of friends shop, it seems that we can get a 30 minute entertainment package for about £2.00, it includes the anticipation of 'the shop', the stroll to the shop, the decision making the purchase and the 1 minutes worth of entertainment from whatever was purchased before that item is forgotten, today it was a Christmas paper chain that didn't stick, a snowman in a snow scene and a tooth brush with a rattle on the end - anything to encourage teeth cleaning and Anouk was enthusiastic about the contribution, she and her new toothbrush could make to "Daddys drumming". Thursday Izzy, formerly Surrey's No 1 Housewife...she will have to give up the title in Jan due to her recent teaching

appointment...came in full of her usual love and enthusiasm and bought a hat which Anouk loved and wore for a fair chunk of the day.

My cousin Suzanne and her son Daniel came for the day from Dorset, it was great to see them and Anouk bonded with them instantly, she loved the very pink card that Jennifer had made and was not going to be parted from it. Anouk spent most of the day dressed in her ballet outfit and danced Suzanne and Daniel to their car that evening. Ellen who is an old friend of mine, who works at the Marsden has been a regular and very therapeutic visitor came after Anouk went to sleep Thursday evening and helped wrap pass the parcel for Neaves party, and was armed with suggestions for party games, i have spent the rest of the evening taking up the many offers of help we have had for the party, we are all looking forward to a bit of a knees up.

Anouk is still keen to keep up all she has learnt from her one & only Ballet lesson.

Today...it's Neavey's birthday! In terms of Neave the day started at home with Grandma, Granddad & me. Plenty of presents & the grand opening of the Australian Grandparents present whilst they were live via Skype. Friday Night we were raging at club chemo to the sounds of ABBA on Neavey's boom box..pink off course! Tonight we will all be sleeping together...not in the same room but in the same hospital!

The local Fire trucks turned up today for a visit & as you can see both Anouk & the Fireman were well impressed with the whole process.

Also today we were told by the lead Consultant..Stergios (The Greek) that an assessment of the MRI will take place on the day of the which is great & means no agonising waiting around.

Unfortunately it doesn't look like Anouk will be able to come to Neave's official birthday party in the Village hall..I have to say I find it a bit sad but it is also the time when you have to say to yourself that it's short term pain for long term gain..or some bloody shitty philosophical thing like that.

Tonight our beautiful babies have played together & are now asleep together in the same room...we are happy.