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!

He left me in the chair for a bit, it was ok as I was watching Peppa Pig, or was it Barney? But I heard him on the phone to a few people in the kitchen.  I think it was mummy, and Grandad.

Next thing I knew, dad was getting me dressed for an outing! Yippee!

OK, so the outing wasn't what I was hoping for.  We ended up going into one of those places where there are lots of people with unflattering blue uniforms and some people with white coats.  I don't like these people much as they have stuck sharp things into me before.  Mum and dad both know that I don't like it, because I have tried my best to let them know. Maybe they are hard of hearing!

NO!  More sharp things!  Come on dad! I am shouting as loud as I can! Can you not see the water coming from my eyes? That normally gets your attention!  OK, now mum is here and we didn't even fetch her from work.  Strange.  Where is my sister?

Mum and dad are chatting to some people.  I wonder if Kayla has gone missing as they both have water coming from their eyes.  Am I missing a trick?  Mamma Mia is on the TV, they should be dancing with me! Kayla and I love dancing to ABBA.  My neighbour Sarah can vouch for that, because I love to turn the music up REALLY loud!  Mum says I must be her child.  Probably true, because my dad dances like a nerd.

Finally! We have action, mum has her coat on again, we must be going home. Just as well, I'm pretty tired. Missed my afternoon siesta! gggrrr!

MMM, pretty sure this wasn't the way we came in guys.  

OK, I am seriously confused.  Now were are in a room with a cot and a bed.  What is happening guys?  Ah, blue uniforms!  Sharp things in my hand again!  MUM! DAD!  Can't you see my eyes? Can't you hear me!!!

The next bit

OK, so it has been a few days in this room.  I have lost count of how many times these blue uniform people have hurt my hands, feet, arms and other parts of my body.  I have not slept more than a few hours which is just cruel.  I need my sleep dammit!  And I have these bits of tube coming out from my body.  They are linked up to a machine that beeps almost all the time.  I know it beeps, because I copy its beeping sound and mum and dad think it is cute.

Mum and dad have stopped with the watery eyes for a bit which is good.  I thought it was a watery eye competition for a while.  I am not sure who was winning, but it was a very competitive field!  Mum is always saying dad is very competitive.  I think I have that in me too!

Where is my sister?  I haven't seen her for days!  What?  Granny, Grandad and Uncle Kevin?  What are you all doing here? Must be holidays. Where is my sister?

Intermission

Hey ho!  Grandad and mummy have packed my bags for me!  Looks like we are going somewhere.  Homeward bound! Yay!

KAYLA!  Is so fun to have my big sisters hugs!  I wonder what's been wrong with her!  Does not matter, what matters is we are all at home and there are no watery eyes from anybody!  My word, I have been so looking forward to a good afternoon sleep in my very own bed!  I still have this tubey thing in my hand though.

The next next bit

What a great sleep!  What? back in the car? Where to now? I was just enjoying being at home guys!  Oh no.  Not the same little room with the beeping machines! Seriously confused.  On top of it, mum and dad are playing musical beds.  I have heard of musical chairs because we played it at Kayla's party, but musical beds.  Like I said, I need my sleep!  

Will these people stop sticking things into me!  Red stuff keeps coming out! I think dad has finally heard me!  I overheard him telling somebody on the phone he was going to punch the guy they call Doctor.  I want to see that.  My dad has a punch on him.  Did you ever hear about the time on the bus? Ask mum.

What, just woken up by dad.  Pretty strange as I went to bed with mum.  Why is my sleeping bag all wet?  I am going through nappies so quickly.  Not sure why as I am not drinking anymore than usual.  Could be all the stuff from this bag of water which runs through the tube into my hand(or leg) depending on where the blue uniforms stick them.  Just hazarding a guess.

Hey ho!  Off in the car we go!  Home time! Dad, you missed the turn off!  This one says M1.  Even I know our turn off is the next one.  This is the road that takes us to Brent Cross.  Mum, please listen to dad on this one, neither of us like shopping!

Dad, wrong lane again, Brent Cross is the left lane! Mum is going to be mad with you! Great, traffic!

OK, where are we now.  Lot's of people here. I know.  It's Great Ormand Street.  This is the place Kayla is always trying to raise money for.  She says she wants to work here when she is big.  I keep telling her she is already big, she doesn't listen.

Lot's of blue uniforms here. Some white coats and some stripy red and white shirts too.  There are also some children here.  Most of them are bigger than me, but smaller than Kayla.  Most of them look a bit strange.  They have little hair on their heads, like old people. A lot of them have the kind of tubes I have had into my hand and foot, but theirs all seem to go into their noses.  That looks itchy man!

Dad is playing the watery eye game again.  But he isn't letting mum see.  Is he cheating?  I hope not.  They always say to be fair, share and care, like my good friend, Barney.

This place is quite fun.  There is a big playroom with more toys than my friends Luke and Liam, except this is better as there are lots of girlie toys too! Where is Kayla? She would LOVE it here!

WOW!  It must be a new restaurant or hotel as the waitress has just brought sausages to my room! Service with a smile. I like it!

Who is staying with me tonight? Mum or dad? I am losing track of this game. They don't seem to be getting bored of it though. They have even brought in a lot of my things from home, Kayla's old duvet too, but still no Kayla. Maybe she is having a long sleepover with one of her friends.

The next next next bit

So dad stayed with me last night.  The new beep machine woke me up very early this morning.  Dad said it was 5 o'clock. I really did try and go back to sleep, but the man in the hotel room next to ours was snoring quite loudly and I just couldn't get back to sleep.  I eventually pleaded with dad to stick a Peppa Pig dvd on.  I know he loves Peppa as much as I do.

I have also been asking dad for some food.  I am starving here, and I think he has turned off his ears as he is ignoring my calls for food. I am getting quite used to these blue, stripy red and white coat people. They don't hurt me too much here, but they do fuss a lot with poking and prodding me with things.  The stripy girl calls it OBS. I call it annoying.  And she doesn't let mum or dad throw my nappies away. That's just weird!

Hey ho!  On the move again!  Walk a bit. Down in a lift. Walk a bit. Up in another lift. Walk a bit.  Blue girl and stripy girl leading us. Another play area.  I like this. Mum and dad are back at the watery eye game. I didn't hear them say ready set go.

So that was the weirdest thing I have ever had.  One of the white coat guys put some white stuff into the tube in my foot. Mum was holding me.  I felt quite sleepy and heard mum playing the crying game BIG TIME! She must have got a big score. Watch out dad, she is catching up. But before I could see dad try and better her, I must have fallen asleep.

That was a deep sleep.  Must be the lack of routine which is doing my body clock in. I am sure I have missed a bottle.  I feel a bit sore on my back. How do I explain to mum that there must surely be a pea under my mattress?

This place certainly rocks!  Not only did mum and dad give me loads to eat after my short kip with the white stuff, they gave me a bottle and I had my normal morning sleep which was great.  Then, to top things off, we had a party in the playroom!  One of the boys was turning 6!  Strange as I am a lot younger than him, but I have lots more hair than he does.  There were two clowns, we could decorate our own cupcakes, eat flings and even chocolate cake. Dad ate more of my piece than I did, but that's ok, I love him. After the party dad and I went back to my room. Getting around is a bit tricky at the moment as I have to go everywhere with the beep machine.  It's like my shadow.  Mum was lying on her and dad's bed.  She always says she is not competitive, but she is.  She was practising the watery eye game. Sneaky mum!

The next next next next bit

Mum and dad are always telling me what a "clever little girl" I am.  Why do they think I don't hear or understand them(or anyone else for that matter) then? If I could talk I would let them know that my ears and brain function pretty well together.  So a white coat came in to talk to mum and dad this evening.  It sounded quite important so I thought best pretend to be sleeping in my cot.  Unbeknown to them, I had one ear finely tuned into the conversation and was playing a cunningly subtle game of "peekaboo" from behind my comforter, whom I call "lamby" (lam-ee; Yes, it's a silent "b"). 

So the chit chat went a little something like this…(edited)

White coat: "Charley-Rose has got AML."

Mum: (eyes fill with water)

Dad: (eyes don't fill with water, but his colour changes)

White coat goes on to explain in more detail.  Although I can hear what he is saying, it doesn't mean much to me.  Anyway, I will try and give a run down of what he said.  I am quite good at repeating things. Polly Parrot on Peppa Pig repeats stuff all the time.  I thought it would be good to learn how to repeat things as Polly always cracks Peppa and George up with fits of laughter.

Basically mum and dad were shocked as they thought I had something called ALL.  Slightly more common than AML with a better success rate.  AML has more associated health problems. Turns out my type of AML has a subtype called M5. One of the big risks is strokes.  Not sure that's a completely bad thing as mum and dad always tell me to be gentle with our kitties, Jinga & Wakame, and to "stroke" them gently.  The other thing the white coat said was that I would have to be in this hotel for 6 months.  Apparently that means I get to have my birthday party here! How cool!  More clowns please!  The man also went on to show them some charts about a drug called chemo.  Slightly mixed signals coming through for me here, as I know mum and dad are strictly against drugs.  I know this because dad let's me drink the last drops of his beer with him.  He always whispers in my ear that beer is fine, but say no to drugs.  Apparently I am getting some of these cocktails tomorrow.  Going to be interesting. Double standards and all dad! What else did they talk about?  Apparently Christmas is coming early for me, as they are going to give me a Hickman Line, I hope that is something like a stencil kit, as I really love drawing.  They feel that I will be so busy drawing that I won't have time to eat, so they will give me one of these tube things which will go straight into my tummy.  That way I can just get on with drawing and not have to worry about eating.  Mum loves drawing too. Is this her being "pushy"?

The next next next next next bit

Mum gave me breakfast quite early this morning. Blue uniforms took red stuff from me again. Cool, visitors today. Mum and dad's friend Princess Fiona bakes the best cupcakes and cake. I can see chocolate cake in a container! Can't wait to have some. OK, so Princess Fiona has gone, why isn't anybody giving me that cake?  Ah, mum says something about not being allowed to have the cake until I get my present, remember, the Hickman Line. Makes sense.  Who eats cake before presents anyway??? 

Now dad, granny and granddad are here. Where's big sister?

Guys, seriously.  Where is my food? I can understand no cake until presents, but I can see banana's, grapes, hot cross buns and BREADSTICKS!  Come on!  I'm starving here!  Why have they replaced my bag of water with a bag of orange juice? And why do they call it platelets and not orange juice?

OK, things are going from weird to bizarre.  Two of the whitecoats have just come in.  One look like a bee keeper.  Yeah, you are probably wondering how I know what a bee keeper is.  I have a cousin called Karabo.  He had a phase when I was smaller than I am now, when all he would watch was BEE MOVIE. I have seen it enough times to know what a bee keeper looks like, that bees can't fly in rain and that Ray Liota is as dodgy as David Spader.  Don't ask me how I know that!

So it turns out, this bee keeper lady is here to give me my first drugs.  I can't say I was happy with the idea. Dad was holding me really tight. I was filling and emptying my lungs with all my might, really giving my vocal chords a good seeing too.  Even turned on the taps. Dad wasn't listening though.  He had just turned his ears off.  I don't think anyone noticed as his back was to the rest of them, but he had turned his water taps on again.

My big sister has learnt how to tell the time on a clock this year.  Because of this, I can look at the clock in our hotel room and with some simple maths, also thanks to big sister, I can tell you I have not eaten in 13 hours, and I still have not received my Hickman Line stencil kit!  What is happening here.  Very out of character for mum and dad. Granny doesn't seem to be herself either.  Big sister says granny does everything possible to make her happy.  She won't even give me a breadstick!  My nanny Reyhan came to visit and brought a bag of goodies, but even she isn't giving me anything. 

Mum and dad are starting to get very agitated.  Maybe they haven't eaten either? Soon enough though, dad comes in and says "Food Time!"  Yeehaa!  But still no present and still no cake.  Right now, I am happy to settle with little cocktail sausages, hot cross bun and banana.  Oh no.  I have hardly started eating and I'm bringing it all up.  This is not good.  I don't feel very well.  All I have wanted to do today is eat something, and now I can't keep anything down.  Not to mention how tired I am. Mum and dad seem shocked.  Apparently it is the drug cocktail which is making me get sick.  Not surprising, dad says no drugs, and I have seen mum is no good herself on cocktails.  What do they expect from me? I'm only little!

The next next next next next next bit

So dad stayed over last night.  He was there when I woke last night.  I had a pretty good sleep, but I heard dad telling mum on the phone that the beeps went off every half hour.  I was none the wiser.


Breakfast.  At least the food is staying down this time. Looking at the clock it must be seven thirty as the little hand is half way between seven and eight and the big hand is at six.  What are we going to do today I wonder?  Maybe my present will arrive, and I can still see Princess Fiona's cake.  In case you were wondering, she is a real Princess. Prettier than Kate Dimpleton, and nothing like her namesake who married Shrek.


OK, this is not good.  Breakfast has hardly settled in my tum, and already I have been needled twice. I now have tube ends in both my feet, one hand and one arm. They have taken red stuff from me twice today.


It's getting close to lunchtime and dad says we are going for a walk.  This time a green coat who I have not seen before leads us through a maze of different lifts to a place they call cardiac.  Apparently I am going to do an echo.  I know what that is because Kayla had an echo toy once.  You could talk into this thing and you would hear it repeat what you said a few times, slowly getting quieter.  Anyway, I tried shouting a few times, but I couldn't hear any echo what so ever.  All that happened was a lady rubbed some cold jelly onto my chest and then smeared it around with something which look a bit like a tv remote. It made funny drumming noises depending how hard she pressed it into my chest. I think she liked me because she said I had a good heart. Dad gave me a big kiss.


Back in my room, had a little sleep in dads arms. It's now past lunchtime.  I hope this isn't the same procedure as yesterday. "Same procedure as last year Miss Sophie? Same procedure as every year James!"  Dad and Uncle Willox are forever quoting that.  Something about dinner for one. Anyway, I am pretty hungry again. Why no food again?  I hope this is not a new routine they are trying to instil. 


OK, cheese and rice people!  I am making a bad impression with all the other guests here.  I am not a fan of throwing rolling tantrums in corridors, but you lot are leaving me little option. I want food! Grandad and mum are here and they must be in on dad's evil gameplan today.  To top it off, I think they have forgotten about my Hickman present.


So a man dressed in blue from hat to toe walks in.  Asks mum and dad a few questions.  I am sitting on the floor with granddad building blocks.  Granddad used to be Mr Oil at BP, apparently he doesn't work anymore, but I think he secretly is still available to tell them what to do.  I think he studied engineering.  He must have been quite good at engineering as he built the biggest tower ever with the blocks! 


I hear the man in blue say he is ready.


Walkies time again.  I hope it is a fast walk to the kitchen! Alas, more lifts and corridors.  This is a pretty big hotel! I heard mum and dad say there is a pool in the basement. Pretty cool, because I love swimming.  I recently started swimming lessons.  I have only had two so far, but dad thinks I am going to be a champ! Swimming in my family is quite big. Kayla swims like a fish. Grandpa Keyser used to swim for Transvaal at some stage, so did grandad, granny used to swim for a country called Rhodesia. She could be talking piffle as I couldn't even find a country called Rhodesia on my sisters map of the world.  Mum apparently swam the Midmar mile, but then she froze her shoulder. I know. Weird. Dad used to swim lots too, but mum says he is now just a whale.  I think whales are good swimmers. 


I don't like the look of this.  We have made our way to the belly of the hotel. Perhaps this is the staff kitchen? The doors open. NO!  I see a table like the last sleep trip with more blue'd up people. I even see the candle looking thing with milk in it.  They don't waste anytime in asking dad to hold me tight.  The white stuff goes into the tube in my arm.  Mum and dad are singing a lullaby. 


I am SO sore! What just happened. Where are mum and dad? Where is big sister? Granny? Granddad? My neck has a cut in it. There are tubes coming out of my chest. There is a tube I feel coming from my nose. What is happening? Who are these strangers holding me?  I am crying so much right now.  Where is lamby?


What seems like an age, mum and dad walk in through the doors. It is not enough though. I am not happy. Why have they done this to me? I whimper as they take me back to my hotel room. 


Mum and dad must be feeling really guilty. They have caved on the new routine and mum gives me a nice cold yoghurt.  It is so soothing, but still I whimper between each spoonful. I even got to eat some of Princess Fiona's chocolate cake! Not much, as dad was hovering again.


I am so pooped. Mum and dad can tell. So they put me to bed. No needles tonight. That makes me happy.  The blue coats just stick some things into the ends of the tubes which now come from my chest. It doesn't hurt anymore. Now I just watch. No screaming.