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.

A not so short drive home during London peak hour traffic, and mum and dad were arguing as to who could carry me through the front door. Mum won, naturally. Mum and dad had not told Kayla I was coming home.  She was sitting in the lounge watching Spongebob Squarepants with Grandad when we walked in.  She casually turned around to greet us all.  She even greeted me normally with little change in expression. A second later, the penny had dropped and she went (as dad would say) Chicken Oriental Mental! Her excitement was somewhat contagious and I could not contain myself.  I ran STRAIGHT to the Hi-Fi and demanded to DANCE!

First off was my favourite song by the Black Eye Peas, "I got a feeling" and boy oh boy, it was a good night!

It was really great to be at home for that week.  I was still visited everyday by a lady called Rosie who came to put things into my wiggleys and to take red juice from me.  Mum and dad also had to give me some antibiotics through the tube in my nose twice a day.  They even taught Kayla how to test my line and give me the antibiotics.  She is very clever. 

The best part of being home was eating food lovingly prepared in our kitchen. Sausages are clearly still my favourite! I started eating so well that mum and dad decided I could do away with my upside down, nose tube bottles overnight.

I thought I would try and catch up the last two or so weeks with a few pictures and just add a bit of comment with each one.

This is Rosie coming to give me my antibiotics. Rosie is so lovely. I think Rosie and my granny have talking competitions. That's alright. Rosie is an Angel. (so is Granny)

So I am not sure how much I have told you about my "thing" for stickers.  I just love stickers. My obsession started before my holiday when a friend of dad's sent me a PeppaPig sticker book all the way from Mauritius. Not that I know where to put the stickers, but these are the PeppaPig stickers in the best place possible, and this is my cat Wakame being tagged.

Oh what happy days to wake up and share mum's breakfast in bed! What more could a little girl want?

One of the best things about being back home, was being able to go out and enjoy some fresh air.  Here I am going for a walk on our green while Kayla rides laps, desperately looking for her friend Luke or Lolly to play with. Mum and dad love going to the green too as they are more than likely to be invited in by the Ellis or McManus clan for a drink of sorts. I don't mind either as Liam Ellis and Connor McManus are my chums too.  Only I was not able to see them this time round as their households were a bit poorly and I was still needing to be kept in metaphorical ball of cotton wool.

I challenge David Copperfield to do this. Mum, dad and I went to Van Anastasiou's fish shop, aptly called The Catch for lunch oneday.  Van is one of Kayla's friends, Ella A's dad. My dad keeps saying Van is a legend. In fact, mum, Granny, Grandad and most who know him, or know of what he has done during my two stressful times, know he is from the top drawer. From station runs, to home cooked meals delivered to the door, Van waits quietly in the wings and delivers with his Big Fat Greek heart.  Anyway, back to the picture and the best fish and chips in London. Van has these little windmills. I can make them spin (clearly) with no blowing, no battery and a straight face. Come on Copperfield!

Here I am chilling at home. I think I mentioned before how I love my Grandad to just "be around".  You can see him in the background reading on his kindle. Mum put this funny headband on me.  She thinks it is cute.  It probably is, as dad put it on me the other day and everybody coo'd. I think it makes me look a bit like "mini me" from Austin Powers. 

The next x 20 bit

Competing with PeppaPig for top spot has to be Barney.  That big loveable purple dinosaur with his friends BJ and BabyBop are forever singing a song called "Silly Hat".  Well, on the drive back to the hotel, I found the rather silly red nose day red nose for the car which mum had purchased. Naturally we broke out into song..."A silly hat, a silly hat, I wear it on my head 'cos that's where it's at..."

I got back to the hotel on Thursday last week. Not entirely sure how this whole episode works.  I thought hotels were meant for holidays away from home. Right now it seems to be the opposite.  I cannot tell a lie.  I was not completely happy coming back.  I was alright until mum and dad took me to our new room. That's when I kicked up a fuss.  My mum and dad are pretty clever though, and they knew immediately how to settle me down and cheer me up.  A quick visit to my friend Sonny.  Here is a pic of me chilling with one of the dearest boys I know.  Even dad thinks he is a sweetie! Here I am chilling with my friend. Sonny even lent me his favourite big Mickey Mouse for the night. What a caring, giving little man!

So that was Thursday evening. Friday morning and I was taken by mum for a little excursion downstairs to one of the suspicious looking floors.  I was right in my suspicion, as out came the milky stuff to go into my wiggleys and make me all sleepy again.

When I woke up, I was NOT a happy camper.  Mum and dad were there. I could not tell who I wanted to hold me, or who I even trusted to hold me. I know mum and dad don't like it either, as they just get a glazey sad look on their faces when I am like that.  I settled down eventually and once back in the room overheard mum telling Granny on the phone that I had just had my "bone marrow biopsy" and "lumbar puncture". Apparently they inject some of this chemotherapy stuff into my spine, and then take some of my "bone marrow" to look for signs of leukaemia.

I was not feeling very well during the rest of the morning.  A quick trip to the playroom for some drawing was just what I needed. Or so I thought.  Next thing I knew, I was vomiting all over my artwork. Mum and dad had to change me five or six times during the next 30 minutes as I was not a happy camper at all. One blue uniform with a bit of magic into my line later, I was like a new person! Back to my old self!

Later that Friday, around 2pm, we got the results from the "biopsy". I am apparently in remission. To the best of my knowledge, that is very good news! Mum was quick on the phone to Granny & Grandad and uncles Grant & Kevin. Dad was a bit slow off the mark, which is strange for him and his phone. He was just a bit watery eyed. He eventually let uncle Heath know.

Mum and dad were by now in very good spirits.  I was thinking where to get some Black Eye Peas dancing going down.  However, the elation was short lived.  At 3pm, the blue uniforms came in to the room and informed us that we had to start the next round of "chemo" straight away. This block is the same as the first, 3 different types of "chemo" but only over 8 days, not 10. Mum & dad came back to earth, with a thud. If the reality of the impending 8 days was not enough to ground the most optimistic of souls, the thought of having to go through chemo block three and four still on the horizon would surely break them. I am going to have to raise my game to help them through this.

The next x 21 bit

This hotel has become like Grand Central Station. There are new faces on a daily basis.  Some come and go on a regular basis like Riley, Bilaal or Cieran. Some hold big farewell parties like Seamus. I missed a big farewell for my friend Ben who also had AML leukaemia. Some are sent to hotels closer to their homes. Some don't wake up.

My good friend Sonny though. He had a big farewell. Those are the kind we like. It was very bittersweet to see my Sonny leave.  Very selfishly I wish he could have stayed.  When I walk passed his room I feel an empty feeling.  Dad still says "Hi Sonny!" everytime we walk passed his room.  It's not the same here without him.  For Sonny and his family though, they certainly have used up all their timeshare here. In 5 months at this hotel they were only home for 3 days.  Now they are home for good! So very happy for them. Here are some pictures of Sonny's farewell.

Sonny is 6 years old.  If you read back in my posts, we celebrated his birthday in the very same playroom on my second day here. Sonny we think will be a Dr one day. He knows all his drugs, and even administers his on treatments sometimes. Dad thinks Sonny might actually be a good fund manager as he has already shown great wisdom in "hedging" his bets. In this case making a play for me AND my big sister!

A little later in the day, this picture was taken of my friend with his mum and dad, leaving the hotel for the last time! I hope to have a similar picture round about July.

The Next x 22 bit

I am currently on day 7 of 8.  I am touching wood as I type this.  Until now, bar the post "biopsy" sickness, I have not been sick.  I said earlier I would raise my game for mum and dad's sake.  I think I have done quite well.  There have been a few times where I have gagged and wretched, but I have managed to keep everything down.  Not that I am eating much, but the upside down nose tube bottles fill me up quite nicely. 

Each day that has gone by, my "blood counts" have all slowly started coming down again. I am not yet nutropenic, but the staff here believe I will decline a lot between 5-10 days from tomorrow.  I will try my best to prove them wrong.  I have done so once before.

The day before I went home for my holiday (weird I know) I was taken for a CT scan to have a closer look at the growth in my lung. Yes, there is something there, but it is apparently fungal due to the infection I picked up last time when my blood was boiling. Anyway, I am diverging.  Back to proving the staff wrong.  The CT scan only takes about 10minutes and they give a strong sedative which puts people to sleep for about half an hour.  It normally takes 5minutes to knock people out. Needless to say, over an hour later, I was fighting, quite literally, like Foreman v Ali in the jungle. Like Foreman, I gave it my all, but lost eventually.  Still I proved their 5 minute marker VERY wrong!

I will try and keep a more regular update going, now that I am back in my stride here at the hotel. I have also got a host of happy feet to upload. Don't fear if you have already sent pictures and yours are not currently up, they will be within the next few hours.

Lots of LOVE,

Charley "I'm in REMISSION" Rose,

xoxo