Day 6 of Operation High Dose....

Today has probably been the worst day so far of this Hi Dose caper. Up until today Anouk has had very little sickness but it all kicked in over night. She, we, didn't sleep between about 0100 & 0500 last night & she was sick a couple of times during that period. Then again when she woke at about 0700, After that it wasn't too bad & she actually let me have another hrs sleep..as long as she could be in my bed. The sickness was off & on at various times during the day but in between Anouk was on good form...apart from when she was sick in the cafe & I hadn't taken a bowl to catch it in!

Neavey & grandma came up this afternoon with Neave having another chat with the Phsycologist who said she 's fine...it just the parents!

I started 6 days ago with the aim to keep everyone up to date with her decreasing blood levels but I have failed. Anouk has one more day of chemo before a 72hr break before her stem cells go back in.

The other news is the that Anouk has had 2 medical mistakes over the last 5 days. The 1st was when she was given 3 times the prescribed amount of an anti fungal drug...luckily there were no side effects as a result. The 2nd was yesterday when she was given the correct drug but intravenously instead of through her NG tube. It's an anti sickness drug that can make her a bit drowsy...this time she went to sleep very quickly! So not the ideal situation but luckily she didn't suffer as a result.

Father was very understanding after the 1st one..we all make mistakes & was very... restrained after the 2nd one...well done daddy!

Operation High Dose - Day 1

The 1st night has gone like many in the past 5 cycles of Chemo. At the start of each chemo drug going in Anouk gets a shed load of fluid which tends to blow out a couple of nappies & should have resulted in a few bed changes but due to a lazy father... it was a patch up job. This also meant that there wasn't much sleep for Anouk, Neave & myself. Neavey had a sleepover last night & there was a fair bit of excitement & both were far too late going to sleep.

Neave's 1st tooth finally came out today.

There has been no sickness in the 1st 24hrs which is normally for her & we expect it to kick in tonight..when Catherine's on duty! For the 1st 2 nights Anouk is getting a drug called Carboplatin. These Platin type of drugs have been the one's that have stuffed her hearing in the right ear & is sending the left ear south slowly but surely. We are told This Carbo one is less damaging to the hearing but we fully that expect that in time Anouk will have to wear a hearing aid on her left ear....for good.

Fluids also play a big part in the preparation of chemo going in & then the shitty bits getting flushed out afterwards. This time around Anouk only has to have the fluids attached from 4pm, the Chemo goes in at 7pm - for various durations, & then the fluids will come off at 7am each morning. It's all because of the type of drugs. So today she has had the best part of the day off any line & been running around & eating. This we expect to change as the drugs kick in & the appetite goes & we will have feed her through the NG tube as much as she can handle it.

Blood level wise before she started were:

HB (Red cells): 10.1 WBC (White cells): 6.0 PLT (Platelets): 161 Nuet(Neutrophils): n/a

After the 1st night:

HB (Red cells): 9.1 WBC (White cells): 5.7 PLT (Platelets): 142 Nuet(Neutrophils): 4.2

The schedule has drugs going in over 7 days then a rest for 72hrs before the stem cells are re introduced next Monday 22nd feb

There have been a few celebrations for Anouk's 3rd Birthday. This was with her mates last Sunday at home.

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Back to the Mars Bar tomorrow

We have had a fantastic few days at home, the longer that Anouk is off of chemotherapy the stronger and healthier she becomes and we had a lovely day today, with a trip to Wisley to see the butterflys and Big cousin Mayas 11th birthday party. Bern, Rob, Owen And Billy came to stay last Saturday night and we loved spending time with them.

Last week and earlier this week we have had the usual trips around various hospital appointments, Auntie Ju took Anouk to St Georges or a heart test - all ok. She had her usual kidney and hearing tests - hearing has deteriorated slightly and it seems likely that she will need a hearing aid long term but currently functions extremely well on the hearing she has. Seh had her MRI on Monday and she tolerated the anaesthetic very well this time and the results were very encouraging. We had one trip to the Royal Surrey at 4.00am when her temperature went up but it soon came down again and we went home. Grandma drove to our house in her nighty to be with Neave when she woke up - she is amazing - well they both are... Neave has been absolutely fantastic, so loving and caring of Anouk - she did say that she wished that there was no such word as poorly and how sad it was that Anouk was poorly, however despite the odd wobble she still remains inherently happy and fun.

Then there was the birthday party on Sunday - which was lovely - 10 little friends - had a very good time.

Anouk then had to go to straight to the Royal Surrey for a blood transfusion but she has not had any hospital visits since Monday and that has been great.

We had a mad 24 hours of decorating and tidying.

We met with the stem cell coordinator and our consultant this week to go over the treatment plan. Anouk will need the high dose chemotherapy which starts tomorrow, she will have three drugs over 7 days and then two days of rest before having her stem cells transfused on Monday 22nd. She will then be quite unwell with high temperatures and and inflammation of her gut. She needs the stem cell transfusion because her bone marrow will be damaged by this extra high does of chemotherapy and will not be capable of regenerating under its own steam. We expect that she will be in for about 6 weeks - this will be her last dose of chemo. She will be in a private room but not under isolation and we would really like visitors to help cheer us up.

We are aware that the next few weeks are going to be tough for our gorgeous girl, but we are coming to the end of this gruelling treatment regime and that is a mighty fine thing.

More encouraging news

We will update the blog with pictures and more news later but thought that we would post the good news that the tumour has continued to respond to the treatment and is even smaller than it was after the last scan - this is very good news. We will continue with the high dose treatment as planned starting this Saturday.

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!