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!

We are back at the Marsbar...

2230 15/1/10

After an 'extended' break at home we have resumed the ongoing residency at the Marsden Hospital. This time it's room 2 which is the biggest room we have had so far.

The day began with an hearing test at our local hospital in Guildford. Not such good news on that front as Anouk has lost some ability to hear high frequencies in her left ear...the only one that works! The cause of this is the Chemo drugs so with 1 normal cycle & then high dose to go we are hoping it doesn't get any worse! At this stage there is no action to be taken unless It does.

Highlights of the day so far are the return of Hi 5 to the top of the Anouk request show, a big vomit, in fact a pool if it & then the DVD player on the new laptop gives up the ghost! Apart from that... a normal day. The vomit did come after a fairly full on hide & seek with the Tickle monster session & did contain a good amount of carrots! Anouk has lost some weight recently which wasn't helped by picking up the c diff bug in Guildford. Today she weighed 14.5kgs & we have been trying to get as much food..solid as well as liquid..into her as possible. She like carrots & chocolates until I realised that they were filed with alcohol!

This is Anouk's 5 cycle & the last normal one. She will have a longer rest before starting the High dose cycle around the 23rd of Feb. Her stem cell replacement has been booked in for March the 4th which is 8 days after high dose begins. We expect that she will recover from the High dose around the end of March & then start the radiation treatment mid to late March.

We are back at home & all is well...

2300 11/01/10

We have posted two blog entries at once and so If you read the previous post first it will put you in the picture.

Hello all & apologies for the delay in keeping everyone up to date. We've have had some family here from Melbourne & they're bloody hard work!

The recovery from this the 4th cycle took a bit longer than the previous three. It was a combination of a few things that included being moved to the local hospital & the fact that she got a hospital based stomach bug which in shortened form is "c - diff"....no idea what the long version is but it's a pain in the arse, as well as the stomach, & it stuffed up the whole recovery process.

The "c - diff"" was causing the pools of poo & sore tummies, luckily "quacka" the microwaveable duck was on hand to help out! Apart from that her temperatures etc were OK & she had a kidney function test booked in for last Friday (8/01/10) at the Marsden. So off trott Cath & Anouk in the Ambulance to the Marsbar, have the kidney test & they say...why don't you go home! The Marsden run the show not the local hospital. So it's into another Ambulance/taxi to home with all her stuff left at the other hospital. However much better to be home & we had to have 2 days of GFCS treatment...that short for drugs that stimulate the white cell count. Once you have 48hrs of good white cell counts you stop the GCFS stuff & hopefully the white cells in the blood continue to grow!

So we have been home since Friday last week & Anouk has been in very good form...aside from not sleeping very well & the occasional chuck in the mornings. We have been covered in about 8" of snow for a number of days & that has provided great entertainment.

Saturday night we had friends around for dinner & a family Roast dinner Sunday....weirdly that's what many would call a normal life?

The issue now is when we can get back into the Marsbar. Demand is high for beds at the moment & looks like will wont be back in until Friday 15/01/10. Part of us won't to get back in asap & keep the momentum & the other part is looking forward to a whole week at home...!

Happy New Year...

1730 01/01/10

Happy New Year & like us we hope you all have a healthy 2010!

Anouk & I celebrated the night at the Royal Surrey Hospital in Guildford. In fact at the stroke of midnight I was attempting to refill Anouks feed when I realised the pump cap was on & ended up pouring most of the 500ml of feed over the floor ! That was followed by a pool poo at 0130 & a vommit at 0200 & god knows what after that. So basically a normal night mid treatment.

Anouk's temperature went up on queue on day 10, yesterday, and she was quite unwell, sleeping most of the day. She started on antibiotics today & has been much better. Anouk has also been wanting to play, arguing with neave & behaving in a reassuringly two year old manner. She does not have any neutrophils in her blood and so has no resistance to infection, so we expect that she will remain unwell for the next few days. She will also need a platelet transfusion tommorow, they are the part of the blood responsible for clotting and she has very few in her blood, hence has had a little nose bleed today.

Neave and I have had a good day today, with the excitement of the day being me demonstrating how and where to cross the stream near home and ending up chest deep in freezing water! It was a cold walk home. Neave and I have loved having time together.

We all got some lovely presents today from the Samuels in Melbourne which helped keep Neavey occupied.

All going well we can get someone to sit with Anouk for a few hours over the weekend so as we can go & buy a new matteres & some bathroom bits in the new year sales.

On past form we will be home by next Thursday.