2 weeks into operation High dose.

1700 28/02/10

Now 2 weeks into this High Dose caper Anouk is doing as well as can be expected & there has been no major dramas or surprises. The increase in Chemo drugs have had a huge effect & she is very quiet most of the time & drugged up like you wouldn't believe. As a result she is not in any pain, although her tummy hurts when she throws up. A lot of what comes ups is a result of her having Mucositis which is the painful inflammation & ulceration of the mucous membranes lining the digestive tract. She was sick every couple of hours last night but as alway she jsut gets on with it & doesn't complain.

I have been away for the week & only took over Saturday & she has been very bright at times but most of the time either asleep or very quiet. Her blood pressure has been up & down over the last 24hrs. High is not such a concern but a sustained period of low blood pressure will be a worry.

Please don't forget that our good friend Phil Thomas is running the Brighton (UK) Marathon & is raising money for the Marsden Cancer Hospital. If you haven't yet please do make a donation as they do fantastic work here & Anouk has benefitted a great deal from it. He's a mad bastard for running such a long way but we are very greatfull he is.

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

Ticking off the days

These photos were taken over half term, last week when Anouk was having her chemo, the girls had a really good week together and we had quite a few little visitors.

And this one was taken yesterday - Anouk really cheared up in a little soft play session in the play room. She has moments when she sits up and says a few words but much of the time she is sleeping or laying on my lap, she is also on regular codeine which makes her drowsy, she has a slightly elevated temperature but nothing too alarming and she has put on quite a bit of weight - a sign that she is retaining fluid, none of the nursing or medical staff are concerned about her, all of this is "normal" for this stage of the treatment, another week of this and she will be out of the woods, we are just counting the days and feeling positive about a lovely long summer to come... the treatment will be finished on May 22nd at the latest... I met with the radiologist yesterday who outlined the plan for radiotherapy, it will start sometime between the week before and the week after Easter and will be daily for six weeks. Although they do not like to do radiotherapy on children this young, it is important for her to have this to complete the treatment regime.

Operation High Dose day 8

2300 21/02/10

Apologies this is not a very nice pic of our nooky but....we have had a very rough time over the last 3-4 days but by today she was much better. Anouk has not been very well & as a result not sleeping very much.... a vicious circle. She has been catching up with a few hours of sleep during the day but generally has not been a happy camper. On the plus side she was drinking a lot of water..at all hours of the night!

Anouk finished her last lot of chemo on Thursday night which was probably the worst night of all. It didn't help that I had the head cold from hell & also felt like I was going to die at any point. There has been a lot of throwing up, much of which without any warning, which means the anti sickness drugs she was getting through her NG tube we ending up over me. It came to a head when yesterday morning she threw up over 1 litre of 'stuff' in a few hours. It was a mistake last time but this time she got her anti sickness via IV which knocked her out for a while & by the end of the day bought her back on the level again. She slept very well over night, which was good as grandma was with her while Catherine & I went out for a bite to celebrate Catherine's 43rd birthday...sorry did I say 43rd!

As I said today was a lot better. She has started to get some high temps, but a dose of Calpol (UK Kids Panadol) & once the temp comes down she was getting back to as normal as you can be under the circumstances. Her red cell levels dropped so she also got a transfudion today & has been opn IV fluids for while with the aim of giving her a boost.

The next week is by all accounts going to be the tough one. We can expect her to getting major mouth sores, a lot of diarrhoea & it's quite possible that she will end up in PICU at St Georges by or over the weekend. Her stemcells go back in Monday but it takes about 10 days before they start to kick in & help out.

So far this is all in line with what High Dose does to you....it better be worth it.

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.