We Are Happy

We are happy!

Neave and Anouk are really enjoying being together and a further bonus is that Neave is fantastic at jollying Anouk out of her three year old moments. We have had a really good week doing normal family things together - as you can see from the photos. And today Anouk and I visited Katie, Anouks lovely child minder - Anouk insisted that I left her to play with Katy and so I went and enjoyed tinkering in the allotment and lunch with some girlfriends - we both had a lovely day and I plan to make Anouks date with Katy a regular Monday thing at least until radio starts. Anouk is going to ride a shetland pony tomorrow and is very excited about it - however we are going to have to squeeze it in between visits to the Royal Surrey as her blood test today indicated that she needs a transfusion of blood and platelets sometime this week - probably tomorrow - this has not come as a surprise as her bone marrow is not yet recovered after the stem cell transplant.

The brown moustache is not another chemo side effect but a result of chocolate indulgence. Anouk has not really regained her appetite and so although we are desperate to move on from the nose tube, i think that we are going to have to be patient for a little bit longer as she can not really survive on Grandad's home made summer pudding (which is pretty much the only thing she has eaten for the last 48 hrs and is not in plentiful supply at this time of year). Everything we give her is fortified with powdered milk or cream in an attempt to pile on the pounds.

HOME

We have been home since Monday and saw the team at the Marsden today. They are all delighted with Anouk's progress and Stergios, our consultant said that Anouk was out in record breaking time, this is great news, she has tolerated her chemo well, has had a good response to it and this is all that we could hope for at this stage. Radiotherapy will start around Easter and in the meantime we are all enjoying spending normal (whatever that is!) family time together, we can never thank you all enough for your invaluable support.

On the improve

The cheeky one is back.... (and i am not talking about Sharon...)

Anouk was allowed in school for the day - i might have difficulty keeping her away tomorrow

One to one numeracy tuition for Neave

Don't try this at home!
The girls decorated HMS Belfast T-Shirts - now Anouk's nighty

Anouk has improved out of sight over the past 24 hours. She has been up all day today, has been smiling, chatting, walking short distances, she has been taken off of all but one of her antibiotics she is even vaguely interested in food - looking at it more than eating it. Her improvement is reflected in her blood results. We are all delighted and very impressed by the rate of improvement as she was expected to be unwell until the weekend. I am now desperate to get home but the medical staff are keen that we do not rush things, she remains on intravenous feeding and so the main aim is to increase her nasogastic feeds and encourage eating and drinking and wait for her to get a bit stronger.

Neave has been up today, I was missing her and she wanted to visit, the school at the Marsden had a visit from staff from HMS Belfast and so, with the support of her school, it seemed to make sense for her to come up - she had a sleepover last night and the with the combination of Anouks improvement and Neaves visit i was so excited i could hardly sleep! Anouk has woken up very unhappy each morning since she became unwell, but this morning i knew we were going to have a good day when Neave and i were laying in the bed in the cupboard and the first thing we saw of Anouk was a cheeky hand waving above her cot sides...

Neave had one to one tuition, non stop activity and so has loved being here.

I feel better now!

2230 28/02/10

Anouk slept most of this afternoon & was in good form when she woke up..& mummy came back!

So we thought it would be nice to have some happy pics.

Have a good day everyone.

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.