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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.



So, that boredom, must be the reason the white coats decided it was time for me to leave and for another child to come in and experience life at Great Ormand Street Hospital Hotel.

Friday morning started just like any other.  Like the previous round of chemo, I had needed two bags of orange juice and two bags of red juice.  Luckily this time I only spiked a fever once during my recovery period, again, after one of the orange juice episodes.  Unlike any of my previous three rounds though, I am proud to say I did NOT get sick once!  Quite an achievement I think.

Another achievement is that my entire recovery period was 4 months to the day and add one week since I was first diagnosed.  An achievement indeed as the average is apparently 5-6months. Lady luck was definitely on my side. Although, I think the majority of you reading this, those in particular who sent me pictures of feet, had a fairly big hand in setting off a rather large cracker under Lady Luck's bottom. For those of you who have not yet sent pictures, please do, as there is still time and who am I to turn away positive LOVE energy!?!

So Friday 10 June was quite a surprise for mum and dad.  Dad was walking me up and down the corridors in one of the Porter chairs when one of the white coats stopped to have a chit chat. We were only expecting to go home in a few days, so when dad was told the news it really was quite a surprise. Needless to say, he was very quick on the blower to mum, as we of course now had a leaving party to arrange in double quick time!

Mum fetched Kayla from school early and they made their way into London stopping off for some party goodies en route.

3pm and the playroom had been transformed into a Hello Kitty meets Minnie Mouse wonderland with my friends, blue coats, white coats, red and white striped and green tops all popping their heads in to have a piece of yummy chocolate cake or doughnuts and not to mention the sweets, crisps(chips) and flings/wotsits...you get the idea.

We had music blasting to encourage a bit of dancing and I must say, Nathan and I were the only two who really got into a bit of jiving.  Nathan has loads of rhythm and at one point was busting such crazy moves that he knocked his oxygen bottle over which crashed onto Jack's mum's toe...OUCH! Casualties aside I think we all had a great time. This is Nathan mid moves! Then big sister Kayla, Nina, Astrid and her mum.

It took quite a long time to eventually pack up the room and even longer to ACTUALLY leave! There were just too many good-byes to be made. At one point I thought we were going to make the staff change over at 8pm.  That would have been fun, but I will go and say more good-byes and hand deliver thank you cards when I visit the hotel on the 4th of July.  Besides being a firework day for many people who talk with a peculiar accent, it will certainly be a reason for Katy Perry's "Firework" song to be played VERY loud as it is of course the day when my Hickman Line is removed.

So as mentioned somewhere earlier in my blog, my friend Sonny, who I must mention, is doing incredibly well back home (and school) had a picture taken when he left the hotel for the last time.  We asked Becky the play specialist to take a picture of a very very happy family walking out of the doors for the last time.

There are so many special people to thank.  In terms of visitors who made it to the hotel at various stages, Princess Fiona, Uncle Grant and Aunty Vanessa, Uncle Kevin, Oink, Crazy Michelle, the Marshes, Anastasiou's, Trish, Martin, Zuber, Stuart, Richard, Claire, Reyhan, Nikki, Gavin, Stodds, Eey-Ore & Winnie the Pooh and of course my Granny & Grandad and the best big sister in the world, Kayla.

Also a big thank you to all who sent gifts, who sent feet, who spread the word and in advance a thank you to those who will be supporting my walk in two weeks time! I also would like to thank a certain gentleman, Gordon Putley, who I will be giving more details about in August.

Finally, there are a few pictures of some of the staff at the hotel.  I was not able to get pictures of everybody due to shift work.

Becky- Play EXPERT

Lucy-Play EXPERT

Katie - I was a bit frumpy, but she really does make me smile!

Nikki - Angel

Helena - Take a bow! 

Abi- Doesn't like stickers :(

Charlotte

Fiona

Hannah - One of two Hannahs -BOO!

Helen

Jordan- Also looks great in Astrid's wig

Making sure the ward works

My White Coats(wearing black)

Trevor

Those are just some of the people I will cherish for the rest of my life.

What is next?  Well, you already know I have my walk on the 25th, then my lines out on the 4th July.  After that, it is monthly checkups at first, no invasive pricking, just symptomatic observations mixed with a bit of parenting and medical common sense.  These checkups become less frequent as time goes by.  My initial goals are two years and then fives years of staying in remission. As with any of these things, the longer I stay clear, the better.

I will add a few more posts over the next few weeks and months, but please do not be upset if the updates are not very regular from here on in.

Love and hugs to you all!

Charley-Rose
xoxo