Club chemo take 2!

2300 30/10/09

We have had 3 great days at home with Anouk but now we are back in the Marsden for a Kidney function checkup & then back into a single room (9)...woo hoo...on the ward for the 2nd cycle of chemo. These 3 days at home have in fact been unexpected bonus. We had been told from the start of the 1st cycle to expect not to go home until after the chemo for the 2nd cycle had gone in, that would be a week from now! However due to her solid recovery we were allowed out.

So home for Tuesday, Wednesday & Thursday of this week. As it was half term the cousins were around so there was some trampolining & walks on the hill to be had.

It doesn't look like it but Neave was very excited to have her sister back at home & do doubt happy to be sleeping in her own bed. At one point she did ask to grandma if she could have a sleep over at home?

Wednesday afternoon was taken up with an hearing test that was all good & Thursday was spent inside being entertained by our wonderful friends & family who have continued to give anouk & Neave an amazing amount of presents & the whole family continued support & love...thank you all so much..we can't begin to tell you how much it means to us.

All during the 3 days Anouk has been on great form. Sleep times have been a little up & down though. She will go down OK but will wake most nights after about 6 hours & want to come in with us! The only issue was the level of food her damaged tummy could handle. When she did wake she more than often was feeling sick so we turned her food off at that point, but during the day it was all guns blazing as she was up to 110 ml per hour which is far higher than anything she can handle while the chemo party is on.

Anouk has just gone off to sleep & is getting 6 hrs of IV pre drugs fluid before she gets chemo 1 over the following 6 hrs...sick trays at the ready. So far, as expected, we have walked the ward, done the playroom & watched the American version of Hi 5 about 50 times! Neave was here during thde day & made friends with one of the other patients who is about her age. The 2 of them ran around most of the afternoon tearing the place up. We assumed the other girl was in a fit enough state for all of this as we doubt Neave would have asked if her blood levels were up for it! Neavey's nurses uniform has come along again & she is planning on helping out over the weekend.

Now that we have been through the 1st cycle we could possibly only be in here for 7 days & then back home. If she gets a high enough temperature at home it will be into the local Hospital in Guildford to manage that, but we will see how things go. If we are very lucky we may be able to get Anouk to Neave's birthday party next Saturday in the village hall....maybe.

It doesn't feel nearly as strange coming back in club chemo. The 3 days at home were at times strange in the sense that she was in such good form that you sometimes forgot what the situation was...& then one look at the back of her head sorted that one out.

at home for a few days...

We are home...

We were delighted when we were told yesterday that Anouk was well enough to go home... the turn around was amazing, she has been willing to walk, play, laugh, be her usual cheeky self with her sophisticated sense of humour - all tremendous signs that were echoed in her blood results. But every silver lining... because she is doing so well, we will be starting the next round of chemo on Friday - bringing it forward is a good thing, but clearly has the downside of less time together at home.

Anouk has to have a hearing test tomorrow afternoon at a hospital about an hour from home, and will than be admitted for a kidney test on Friday followed by admission for chemo starting that evening.

But in the meantime... she has been delicious, her usual gorgeous cuddly self.

Anouk's hair has been falling out and she was keen for a hair cut, so I cut it to a few cms all over, she caught a glimpse of herself in the mirror and as expected said "i've got funny hair, it is short" i responded "you look beautiful" she said " i don't think so, and then laughed "but my head looks smaller" We tried on various hats of which only one enormous (aged 10yr old) fleece one with no elastic was a gooer, and even then she is only prepared to wear it outside to keep her head warm.

The Marsden was very accomodating in helping us get home as soon as possible this morning. We have spent the time at Mum and Dads with the "cousins" Julia and Ben are in Tooting, preparing for a move to Surrey in January! the children have been accepted in Cranleigh schools and we are looking forward to having them living nearby...

I have no idea what happened this afternoon as i slept for three hours but apparently the children behave like typical sleep deprived irritable siblings during half term - all rather reassuring really - particularly as i didn't have to play referee.

Lunch at Grandmas and Grandads

Packing up - we had moved in and so it took a while to pack up and move out..

Happy to go home...

We're on the way home!

Until friday...& then it's back in to start round 2!


-- Posted from Richard's iPhone

All going well were going home for a few days!

2200 26/10/09

Anouks has made a very good initial recovery from her first round of Chemo & if she is in good shape in the morning then it will be home until Monday next week....thats what we call...bloody fantastic!

As of this morning she had maintained a normal temperature for 48hrs which is the key sign that she is over the worst of the side effects. Over the last couple of days she did have some severe tummy aches, which was relieved by "Quacka" the microwaveable Duck, but that all seems to have passed now. I have been a work for the last three days & she has sounded better on the phone each day. Anouk answered the phone this morning with a very..animated .."hello daddy"...one of the best things I've heard for along time.

Neave stayed in the hospital Saturday night & as it turned out she had a high temperature & had to be given something by the Nurses!

She will have to go back in on Friday for a Kidney test & assuming her blood levels get to the required level, it will be back in next Monday for...club chemo round 2.

All very exciting if it happens & we'll post some pics of the homing coming tomorrow.

Neavey has her first club chemo sleep over!

2230 24/10/09

After a lovely visit from Sharon, pizza wine and generous gifts from my Medwyn (work) colleagues last night we had a much better day today - only 1 vomit, no temperatures, more white cells, a smattering of neutrophils and a much happier Anouk, there is light at the end of the tunnel. Neave arrived early with Ella and Issy, Issy as usual was delightful company for all of us and bought supper... Nick and Richard visited this afternoon with the troops - Anouk was delighted to see Dylan with the 'funny hair' (it is red) - Anouk is not sure what to make of her hair situation, she wanted to make a hat out of tissue paper this morning, so I think that we need to try some head gear on to see if she tolerates anything, Julia is going to bring a selection tomorrow.

Neave has been here all day and has been absolutely delightful, Morag bought her a nurses uniform and the nurses supplied her with syringes, bowls, dressings etc and she has played nurse to dollys and wounded knights (Bryn and Nye) all day. She helped change Anouk's bed and got given a sticker chart 'I helped Mummy and the nurses" with a sheet of smily face stickers the look of absolute delight on her face was priceless. She has talked about how she is feeling, how much she is missing Anouk and how she feels sad that she is missing out on attention - Mummy saying 'wait a minute' is not good enough... She also told me that she is very special - if she feels sad at school she gets to read to the head teacher, if anyone else feels sad they get to read to the class room assistant!!!! She is very switched on and open about her feelings which must be a good thing and it doesn't take long to put that infectious gorgeous smile back on her face. We are starting to contemplate home....if Anouk's recovery continues like it has over the past few days....it will be sooner than expected...perhaps end of this week - yee hah.

A update from the Boss!

0020 24/10/09

All going well Anouks has hit the bottom of this 1st cycle & is starting to shows signs of recovery..all be it small ones. She continues to react ..'as expected'..which is good news.

Since the last post she has had a number of checks to make sure the chemo isn't playing around with things it's not designed to. She has had an abdominal ultrasound & a Chest xray which both came back all clear which is good news. The main thing at the moment is getting her high temperatures uner control. Various antibiotics have been tried & the latest was Anitfungal which may have done the trick. Her temps have got as high as 39+ deg on a regular basis but it has also dropped back to normal levels as well. As a result she is much more animated when her temp is down & sleepy & pissed off when it's up...not much difference to us really.

She actually had her final amount of chemo for this cycle today which is what she had on day 7. This wont be the norm for the next cycle but it will be for the 3rd. Her update MRI scan has been booked in for the end of the next cycle. This will tell us what effect the chemo has been having on the Tumor.

On a good note her white cells have started to regenerate a bit..0.5 of a cell when we on average have 10! Stergios (The Consultant) was very happy with the way she was going & said that she should actually be a lot worse according to her stats. One thing they expect is mouth sores & so far Anouk hasn't had any. She has however been looser her hair the last couple of days & asked Catherine for a clip so it would stop falling out.

She has been allowed to have about an hour each day free of wally the trolly & his lines. This is the time when we escape, in the 60's style 4 wheel pusher & into the streets of Sutton. You do get some wired looks especially when we headed out at 7pm last night.

The clown doctors turned up today but we weren't in any mood for them so they had to perform form the door as they were not allowed in!

We continue to be very lucky & have many visitors, some Anouk will look at, some will get the time of day & some are basically told to bugger off..in a non verbal way. Luckily you are all very understanding. However she is not liking to having her photo taken so apologies Jeff but I can tell you she really loved the balloons & Alan the Teddy as well...thankyou both every much. Yesterday was a different matter as she loved the wand & fairly cape she was given by Jessica.

All going well Anouk will start to climb out of this low point in thenext few days. Once she has had a good 48hrs of normal temperature they will take her of medication for that. We don't expect to start the next round of chemo for another 10 - 14 days but if she continues to slowly pick up there is a chance we may get a few days at home before she does.

As expected days 10 - 14 can get rough

2230 20/10/10

Exactly as expected Anouk has had a rough couple of days, the chemotherapy attacks all fast growing cells, the tumour, her bone marrow, her hair follicles, the lining of the gut. Hence she is experiencing the side effects related to this, her stomach is sore and irritated, she has needed blood and platelet transfusions, her temperature has gone up, she is still being sick, she is on antibiotics and extra pain control and is now being fed via her veins, with a little bit trickling in to her stomach through the tube. She has slept or sat quietly in he push chair for much of today. It helps to visualise those hideous tumour cells, suffering more than she is...

She is still managing the odd lively and smiley moment, and continues to cope incredibly well with all that is being thrown at her, she is becoming quite an expert on her own care, which syringes should be used, how to turn her feed off, where linen is stored etc etc.

Anouk is quite specific about what she wants and doesn't want and is giving all visitors a hard time, Nicola, Grandma and Jo have all been told in no uncertain terms when their presence was no longer required. Anouk does want to rest and understandably does not appreciate her mother being entertained with tales from the outside world when all she really wants is a cuddle and silence. It is all a balance, and she does seem to appreciate short visits from people who don't mind being insulted... and i certainly do! We will let people know if it appears as though she will not be up for company.

We have been looked after by gifted and caring nurses - nursegate appears to be over, perhaps coinciding with when Anouk's care needs have been more acute and we have got over the 'sensitive new kid in school' experience. The environment is still something of a challenge particularly as the pumpatron is laden with more and more pieces of equipment and Anouk still insists on trips through the hospital and onto the rather uneven terrain of the car park for a change of scene, she is very keen to go down any slopes as quickly as possible, we took things a bit to far when we sprinted down the steep and slightly uneven road form the car park today, somehow managing to drag the pumpatron behind us - great fun but not so good for the stomach we discovered...

We do not know how long Anouk will be in this phase, much of it will depend on how quickly her blood recovers and if she picks up an infection. We have been told that we may get home for a couple of days before the next lot of treatment (cycle) starts, they are prepared to send us home if she is well and if her blood counts have reached a particular threshold, when they have picked to a higher threshold the next cycle will begin.

Her treatment started on Thursday 8/10/10 which is called Day 0. Her next cycle wouldn't start until at least 21days had passed.

We were very lucky to have a number of visitors over the weekend. Uncle Ben has bought a new..ish bike so it outside to have a look at that. Although in the end she wasn't very impressed.

Dressing up is still a big part of the process although she has at time been pissed off at the number of pics her father has ben taking..as you can see.

Cafe society in the mornings with daddy still happens, all be it in a quieter "cafe".

Anouks version of using a laptop keyboard is however more in tune with...Karate!

What a difference a day makes...!

2330 17/10/09

Anouk was a lot more unsettled & clingy today as her blood levels starting to drop. Her red cell count drop enough to warrant a transfusion during the afternoon which should make her feel a lot better. There was a small amount of vomiting & earlier in the day that caused her feed tube to come out of her tummy. It wasn't fun last time we had to put a new one in so Catherine was out of here pretty quick after I arrived! I did take 2 Nurses & myself but we finally got a new one in..... she wasn't happy. Her temperature & blood pressure have been OK but her pulse has dropped a bit.

The big news of the day is that we got a single room. Yes we have moved into No 7 & it is so much better..up her at teh posh end of the McElwain ward. You feel you are in more control as you don't have to be concerned of others loosing sleep as Anouk has a hissy fit!

Lots of visitors today which was fantastic, Izzy arrived with Ella & Neavey so it was full on in the play room. David & Edward then came around & then later Jo arrived with Orla....Neave & Orla then proceeded to play Mummies & Daddies!

Nurse gate was much better today. It didn't start to well when nurse Jo who was looking after Anouk am arrived & I said..." hey Anouk here's Jo.. she's one who smiles & says hello..." Got a fairly interesting look at that point! But we have been looked after by some new gals today & I have to say they have been great. I may have been a little tired yesterday morning!

Anouk has slept on & off since about 4.30pm this afternoon & I feeling a an unsettled night ahead.

The calm before the next storm storm...

1400 16/10/09

The majority of the Chemo drugs went in over the 1st 4 days fromThursday 8/10/09 & there will be one more lot on day 7 of the cycle & that will be it. So when the chemo goes in she experienced vomiiting as a result & that was mostly dealt with by anti sickness drugs, however they do not completely stop her from being sick. On about day 5 the sickness had all stopped & she has been on good form with no major hicups...aside from some spectacular 2 year old tantrums. Yesterday, Thurs 15/9, was day 7 & the last of the drugs went in & as expected she was sick overnight mixed in with a good dose of diarrhoea..part time for the overnight shift! All to be expected.

So thats the 1st lot of chemo drugs done & dusted..the next stage is waiting for the chemo drugs to do their stuff & then the 'other' side effects which are mainly to do with blood levels. Basically the white cells & platelets at some point will head south a rapid rate. To what extent for Anouk we will find out, but we can expect possible fevers & other things to kick in. You then hit a low point for all of this get a few more drugs to make you feels slightly less shit & then when the blood levels are at an acceptable level it's onwards & upwards for another cycle. That won't start until at least 21 days after the previous cycle started & it can be up to 28 depending on how she is going etc.

So on a good note... at 4pm on Wednesday 14/10 Anouk was cut free from all her lines & " wally the trolley". This enabled her to run around & cause havoc! We played races around the corridors with her going one way & me the other. As the good father I would hang back & listen to the nurses have chat & trying work out where the hell I was...great fun! It was the same for the next morning as she had the drip & feed over night so she was able to peanut butter my toast & take a few calls?

Claire came for visit & basically took control which allowed me to go & have a shower & feel half human. there are 2 reasons why she could be let free..1 her food had been on for 24hrs so she needed a break & 2..A drip type of fluid is used to flush a chemo drug out of her system & once it has it can come of..so we now know that she will have to have the drip during & for about 2 days after the 1st lot of drugs.

It was the same situation the next morning so I got her to peanut butter up my toast & take a few calls. It make a world of difference when she can walk/run around without any f...ing lines attached.Kelli visited up with Sophie on Thursday morning 15/10, which was great because anyone that comes in is a very welcomed distraction for her & gives a chance to have a break, poo or even a shower. Anouk is very needy at the moment & life for her in this Hospital is like being in a very small apartment when it's raining outside 24/7 & there nowhere for her to go. The options are the ward, playroom..closed at nights or the corridors around the place, no suitable outside places. So like anyone would, she gets bored & spend about 2mins on any one thing..if your lucky. So not the best in terms of environment & also the nurses are hit & miss. Anouk is very wary of them as most of them make very few attempts to bond with her. They don't seem to look at the situation & say....being a 2 yo she can't communicate like someone who's 5 so we need to have a different approach...you even have to force some of them to say hello when they come & see her. From our point of view it's not a matter of thinking we are different to anyone else, because we are not...it is a case of what comes across as bad communication on some nurses part.

Jenny one of Catherine's good friends in Melbourne described it like this..."Hospitals are the most eye-opening experience from the other side of the fence. Full of genuinely lovely people who all function to their own schedules and requirements…. Patient centered care, or family centered care, is still something of a lovely dream..."

At times so bloody true! Rant over now...feel much better.

Day 4...a sickie free almost normal day!

2330 11/10/09

Today started with a sleep in! After the vomiting of last night, Anouk & I woke at about 0730..had a quick nappie change & then decided to have a few more hours sleep.

Julia, Solly, Maya & Flora arrived & then it was time to get up! Anouk liked what Flora was wearing & decided she needed to wear Flora's jacket & shoes.

It was then time for a Skype video with Granny Sue & Pa & then of with the 4 wheel pumpatron to the Playroom. The pumpatron follows Anouk every where...! If anyone want's to invent wireless infusion..please go ahead.

The day before Anouk came into club chemo she had her 1st Ballet lesson & was at pains to day to point out that she can point her toes.

Cleaning has also become somewhat of a facination...the Nurses all wear gloves when changeing drugs & we have also been told to wear them when changing nappies etc. Anouk just like to pullas many as she can out of the box on the box...hours of entertainment...for her.

The first lot of chemo for the day is just going in over the next 4 hours...where told that the side effects of this one are not "as bad"!

Highlights from day 3 at Club chemo!

2330 10/10/09

Today was the first day that we have all been together since Anouk took up residency here at the Mc Elwain ward of The Royal Marsden, Sutton, UK......glad to see they kept the ward name easy for the kids to remember.

Neavey came up with me this morning after having a sleep over at Lottie & Katie's house & on the way up was keen to know if Anouk's hair had fallen out yet! It was a lovely moment to see them giving each other a hug when they met up on the ward....no mention of the hair after that.

Ward life is a lot better than it was in St Georges. Anouk's in a 3 bed room which we have all to ourselves at the moment. The parent bed folds out of the cupboard next to her bed & as a result .."mummy sleeps in the cupboard.."! The TV's actually work &....there is WIFI...as a result I am now able to use the new mac laptop I 'had' to by so as Catherine could have my old one for Hi 5 DVD requests. There's actually been a change on that front as Anouk was given "Annie" & "Oliver" on DVD & so far "Annie" is getting as many requests as Hi 5....which is a good considering the Hi 5 DVD gave up the ghost this evening. Like most hospitals its' bloody' hot so it shorts & t-shirts as the comfort option.

Drugs wise...there's a lot of them. As mentioned earlier, Anouk will get, in this first cycle, 5 different types of chemo drugs. Plus god knows how many other drugs to counteract sickness & anything else that may pop up. So far the 2 main side effects of the chemo drugs have been vomiting & high..ish blood pressure. One lot of chemo tonight went in for only an hour but she vomited 3 times shorty after it finished, Didn't seem to worry her though. Halfway way through a tiger parking she reminded me to hold the tube in her nose so it didn't fall out! It continues to amaze us that after all the poking & proding she's had over the last month she just seems to take it in her stride & get on with it...even as she is right now sleeping attached to 4 pumps.

Food wise she is still getting all she needs through her nose & doesn't seem too worried when we eat in front of her. She likes to lick salty chips & is then very happy to then pass them onto me!

There have been a steady stream of visitors & tonight Catherine's cousin David & his children Phillipa & Edward came in to say hello which was great. Earlier in the afternoon & great friend of mine Staff came in & very kindly bought & present for each of the girls. This is just another example of the amazing amount of love & support we have received from all of our friends & work collegues. The girls have both received many gifts & we need to apologise now as we have been crap & remembering who has sent it what etc. But we would just like to say to everyone who has sent in a present for both Anouk & Neave...thankyou so much. The girls are always very excited when they open presents & it puts a huge smile on the dial.

This afternoon Staff bought in "Quacka" the microwaveable duck!...yes you place "Quacka" in the microwave & heat it up...there is one of those heatable packs in it's tummy which means "Quacka" becomes a hot water bottle in 2 mins! You have too laugh.

There's no chemo going in tonight but lots of fluid & as such nappies changes..which have to kept & weighed to compare whats going in & coming out. She's now fast asleep...wish me luck!

Update.... nappy change completed...in conjunction with 3 more sleepy vomits...now it's back to snoring!