!!!HOME!!!

The almost last update

And for those who do not yet know...

On Friday 10 June, I was told to leave the hotel, and never to go back.  I don't think it had anything to do with bad behaviour, as everybody kept on asking me to go back and visit.  I think it was more that they could see how bored I was.

Ask any "nearly two" year old if they want to do some painting and get all messy and they will jump at the opportunity.  I think I am all painted out! In fact, the last few days of being at the hotel I had become so bored of the routine of play play play, that I am wondering if Hamley's will even register on my excitement levels.

Ctrl + Alt + Delete

The next x 29 bit

Bill Gates must be God, or a Doctor. 

I am not sure where the Windows like problem lies in the equation of blood and stage cancers. Is it that my body runs Windows, or is it the white coats who are researching the combinations of chemotherapy, who most likely studied at Microsoft, prescribe a number of poisonous cocktails, which in essence performs the Windows cure for when things stop working the way they should... Ctrl + Alt + Delete.

Bring on the day we can go to the General Practitioner and he says, "There's an App for that!"

Walk with ME

My friends Luke and Liam have managed to convince their mum, Trish, to arrange a special walk for me.

The walk is going to raise funds for Great Ormand Street Hotel and also raise funds for a family holiday in Cornwall.  I know it sounds a bit cheeky to raise money for a holiday when I have already had a long holiday at this hotel, but it would be lovely to spend some time together with my mum, dad and big sister when my wiggley's are finally taken out.

The other reason for doing our own little bit of fund raising is that the vast majority, in fact all so far encountered, of Cancer Support or "Make a Wish" charities only accept wishes from 3 years and older.  Obviously I am only approaching 2, so I miss out on making a wish.

Counting Chickens

The next x 28 bit

I have made such remarkable leaps in personal development since being in the hotel. I have written before about my vocabulary, and Reyhan who used to look after me, let you in on our secret about learning to count in Turkish through her blog comment.  One thing I have clearly not yet learnt is how to count chickens. Least, not before they hatch. 

Angels

The next x 25 bit

Time stands still...or so it feels...

I know this is how the last round felt. I know mum and dad have been a little overly optimistic about my recovery period. I cannot blame them really. Round two I was in the hotel for 23 days, 8 of which were chemo days. Round three, I only had 5 chemo days. So it is only natural to be presumptuous and think that I may be out 3 days early, say 20 days. Coupled with the fact I have had no infections to speak of (yes, I am currently touching wood as I type this) except for the first day when I spiked a fever and developed the "pizza topping" like rash on my shiny head.

Looking back....in video

Mum and dad have a YouTube page. Not that they keep it up to date by any means with footage from family life.  Anyway, I was busy watching some of the videos they had posted and nearly wet myself with this one old video clip of me as a baby, way back when. This is our one cat, Wakame, named after mum's favourite sushi joint in Cape Town.

Halfway

The next x 21 bit

Well, so much for the regular updates! You cannot really blame me though.  Apparently time flies when you are having fun.  I certainly have been having quite a lot of fun of late!

The light shines bright!

The next x 19 bit

Spring is certainly in the London air. It seems the changing of the seasons brought around some change for me too.  Apologies for the lack of updates recently, but I have been rather a busy little bee.  

Where did we end off? Oh yes, there was the talk of getting to go home for the weekend.  Well, not only did I get home for the weekend, I was allowed to stay home for an entire week! 

Mum and Granny got the good news in the morning, and next thing I knew, they were packing up all the well wishing cards, feet collages and my artwork which decorated my room.  When dad arrived to collect us, he was even offered a trolley by one of the kitchen staff to help lug everything down to the car.  It is amazing how much "stuff" (mum calls it) you can collect in six weeks.

Drum roll please...

The next x 17 bit

Good news at last!  A full seven day week since my blood started boiling, my temperature has returned to normal.  Unfortunately though, it seems the white coats were not too happy with the pictures they took of my chest, and they have grounded me.  I don't know why. I really did try and smile.  I remember dad telling me a story about when he was little and got into trouble with his Grandad for pulling a silly face during a big family photograph. Seems typical of my dad to be clowning around like that. I think my big sister has picked up on his traits, but I am still an angel.  Interestingly enough, apparently dad's Grandad went to sleep with Leukaemia. I wonder what type he had.

Is no news really good news?

The next x 16 bit

So it has been about a week since I updated my little page.  I promise I have not been lazy.  I wish that were the case.  As the title questions, is no news always a sign of good news?  Right now, to me, it isn't.  Things really were on the up.  Last week Friday and Saturday I was almost back to my best. Running wild up and down the corridors, really stamping my authority on the place! Mum and dad did their swap over on the Friday, and Saturday dad and I just had a cool day together.  Dad wore his French rugby top again.  I think he wants me to support the French too as he was getting me to cheer and high five whenever the French scored.  Maybe I am French, because as the game played on, and the French were clearly losing, I started to get really irritable.  In fact, I felt as though my blood was boiling! Surely I am not such a staunch supporter of Les Bleus?

Departures

The next x 15 bit

So I had a bitter sweet day this week.  One of my new friends, Seamus (that's Irish and pronounced Shaymus), left the hotel.  Bitter because I will miss him dearly.  He is a real live wire and before I moved in, totally owned the place! He is a bit older than me, almost 4, and like me, was diagnosed with a variation of AML.  He had to stay in this hotel for 5months exactly.  Sweet, because he has left and won't need to come back for a long time.  Not that it is bad here, but he was really missing his brother and sister at home.

Recovery block 1

The next x 13 bit

Life is getting better for me it seems.  Bee keepers are long gone. I still don't quite feel like eating much.  I have had good fun playing with my food though.  I don't really like jelly at the best of times. In fact, I distinctly remember dad and grandad giving me jelly for the first time last summer.  They thought it was hysterical to feed me this new wobbly textured food which was sour lemon and lime flavoured. They were too slow in whipping out the camera to capture my facial expressions and I swiftly refused a second mouthful.  Anyway, not that I have given jelly a second chance, but I do quite enjoy teasing them with it.  I take the spoon, act as though I am going to eat it, and then fling it all over the room.  Like I said in an earlier post, I think mum and dad are lowering their standards as I am getting away with murderous behaviour here!

The end (of round1)

The next x 12 bit

Sorry, I have not been feeling too well the last 3 or so days. That infection really seemed to knock me a bit flat. I have not been my pleasant self.  Mum and dad keep saying I am doing so well.  They must be lowering their standards, because normally they would not stand for such crabby behaviour.

I need to get Ramsay on speed dial.  His cooking competition in this establishment is going nowhere quickly.  I have completely gone off my food. In fact, I think I have been poisoned. They always say there is nothing like food poisoning to make you ill.  I have been getting sick far too often for my (or mum and dad's) liking.  We all end up playing dress up a few times a day. Clothes are not lasting long with my whoops's. 

The Journal continued some more

First post

Second post

The next x 9 bit

So on Sunday I had another surprise. I was with mum, driving another car, when a man walked down the passage with a very big smile on his face.  He was wearing dad's coat.  Mum was strange and said, "there's daddy!".  It wasn't him though.  I know what my dad looks like!  Then mum said "what HAVE you done!" The man picked me up and gave me a huge hug. Felt like dad, smelt like dad, but didn't really look like him.  His hair was very very short and felt almost fuzzy.  OK, so maybe it was dad, but it took me a while to get used to him.

Dad's haircut must have inspired mum too.  She came in the next day looking slightly different too!  Not as drastic as dad, but dad kind of gave her the same "what HAVE you done!"

So I am becoming quite popular with the hotel staff.  They are getting to know me quite well. In fact, most of them love playing with me whenever they see me.  I think it is fun, so I like to spend a lot of time around the reception desk where they always seem to congregate.  One of the blue coats even told me she was going to get in trouble for playing with me too much and not doing enough work.  I like her lots. Her name is Hannah. Peekaboo is her favourite game. There are so many lovely staff.  My favourite night time butlerette is called Ingrid. She does her best not to wake me. I also like Helena, but she does not like my dad.  She is Irish, and my dad was wearing a French rugby top on Sunday. I think France must have won.  He did try and make peace by giving the staff a chocolate cake.

I overheard the white coats talking to mum and dad today.  Apparently I am nutropenic. Dad is maybe nutropenic too.  I think so, because he has a cereal called ProNutro which he eats everyday, and he has since been trying to get me to eat it too. It has something to do with not having an immune system.  Again, it makes sense as ProNutro has so many added vitamins and minerals.

I am not eating very much these days.  I don't know why.  I just don't feel like it. Not even sausages. Yoghurt just doesn't even taste the same. I hope this is not what they call menopause. I am not overly hungry though. There is a lady who comes in and talks to mum and dad a lot about food. I like her logic, as she says she is happy to give me more bottles everyday.  Some even when I am sleeping or even playing or driving. So they hang a bottle upside down on the coat hook on the beep machine.  I feel a bit bad when I am drinking and driving like that.  Especially in the police car.

mmm, very tired again. off to bed.

The next x 10 bit

So yesterday was mum's birthday. Things have been pretty quiet the last few days. I have been learning quite a few new songs.  My favourite is Twinkle Twinkle Little Star.  I am getting quite good at singing it, and even sang it down the phone to mum and granny the other day.  The last two days though, dad has been trying to teach me a new one; Happy Birthday to you...  We have spent hours driving up and down the corridors, dad singing Happy Birthday dear mummy.  The various uniforms and other guests must think he is completely bonkers.  I think he is pretty bonkers too. I am only just getting to grips with simple words, and he is trying to get me to pronounce "th".  I know a lot of grown ups who battle with that!

Mum arrived early in the morning which was nice.  We had a bit of a chat, and then I need another sleep. Not long after I woke, I had a very nice surprise! Granny, granddad and BIG SISTER! YAY!!! we all had a play in the playroom.  And it was so great to introduce Kayla to some of my new friends. Kayla should work at this hotel oneday when she is big. She is so caring and loves to help the staff and the guests.

Something is definitely wrong.   I have only been awake a short time since my morning nap, and I feel very tired again. Time to sleep.  After my sleep we were in our hotel room and mum got to open her presents. She got some very cool things.  Not many toys though. I think I would have been a bit miff with that haul, but she seemed happy. Then we went back to the playroom and invited all my new friends, their mums or dads and some of the staff.  Granny had brought such a big yummy chocolate cake!  I had a nibble, but again, didn't feel like much.  We did get to sing happy birthday to mummy.  I tried my best, but was very focussed on drawing a new picture. Mum didn't get to blow out any candles though.  I heard one of the staff say it was because of Health and Safety. Still, I think mum had a smashing birthday!  I know, because dad, granny, granddad and me are all going to have our birthdays in the playroom this year! Kayla says she just wants a sleepover at home for her birthday.

The next x 11 bit

So I am not feeling very good today.  Mum slept over last night.  I think we both slept quite well.  I have quite a high temperature this morning and I am feeling very flat.  I managed a short drive, but would rather just be in mums arms. I have not eaten anything and the lady who talks a lot about food is back.  Granny is also here with mum. I hope I don't have an infection, but I figure I do as the hotel staff are giving me antibiotics.  The last time I had antibiotics I had a sore ear.  I am just sore all over at the moment.

I will try and update this a bit later if I am up to it.  

CR

x

The journal continued...

If you are new to my blog, click here to get the low down so far...

The next x7 bit

Mum stayed tonight.  I know, because I think I had something funny to eat and got sick a lot during the night. It surely couldn't have been the cake. Maybe we should let the kitchen know.  We don't want other guests getting sick too. Mum doesn't seem seem to want to get sick and she is changing my clothes and cleaning me up wearing the same gloves the white coats, blue uniforms, red & white stripes and green tops wear.  Mum and dad even wear those gloves when they change my nappies now!

Who is sending me LOVE?

Show me some LOVE!

So you have probably noticed by now that I am not well.  Dad tried to explain to Kayla that I am like a shiny sports car.  I look amazing on the outside (vain I know), but under the bonnet, things are not so good.


I would like you to show me some support. Mum and dad say there have been loads of messages of support, and I know sometimes when they are chatting to people on the phone they get all watery eyed and snotty.

Journal of an 18month old leukaemia patient

Intro

Hi, my name is Charley-Rose.  I am currently a few days over 18 months old.  I live with my mum, Kerry, my dad, Rudi and my big sister, Kayla.  Kayla is 7 and is the best big sister ever! 

I have just been diagnosed with Leukeamia. There were no tell tell symptoms, but a routine visit to the Dr prompted him to ask for blood tests as my English Rose skin looked a bit to pale for his liking.  

The first bit

The Dr called my dad just after lunch on Thursday the 3rd of February.  I was sitting in my high chair just finishing my sausages for lunch, (my current favourite food!) and dad's face went a bit funny and had water coming from his eyes.  Very strange!