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!

I know it has been near a month since the last update.  I was pretty much near the end of round 2 chemotherapy without being "chemo sick".  Needless to say, the sick free record I was going for did not survive.  I came every close though, only getting sick once!  In fact my round 2 seemed to be somewhat of a walk in the park.  Although I did not actually get to do much walking in the park as my blood levels were so low they were competing with EeyOre's ears.

I certainly did raise my game during my in-hotel recovery period though.  In fact, many of the blue uniforms and white coats made comments about my incredible levels of energy.  Apparently when little people (and big people) are needing regular top ups of red and orange juice they should be rather tired and sleepy.  Not me!  

This hotel is just way too much fun! Beckie and Lucy, who look after the two playrooms on our level, make sure that everyday there is something new to do.  I think they must have red and orange juice everyday to keep up their energy levels trying to entertain all the little guests. 

I think mum and dad were getting a bit frustrated during the last recovery phase.  The knowing that I am in remission coupled with more chemo and the fact that I have been so "full of beans" as dad always says, means that the time here at the hotel just seemed to drag on a bit.  It probably doesn't help when my blood counts tease them.  After my first round, all the blood counts stayed really flat, especially during the Cruella D'evil infection, and then suddenly shot up and I got to go home.  After the second round though, my counts would start to rise, giving mum and dad a bit of home-time hope and then drop off the next day.  This went on for almost two weeks.  The whole time not being allowed out of the hotel to go for walks and enjoy the lovely sunshine outside.

At least during this waiting game, there was no serious infection.  I did spike a temperature once, but it was only for a day or two and the bombardment of antibiotics sorted it out in double time! On the big white board where all my friends names are written there is a home-time date. Unfortunately my home-time date had to be changed a few times.

The all important blood count is the neutraphil. I am not sure if I have explained it before, but let's recap.  The neutropenic threshold is 0.5  That's when I get to go home.  For the next round of chemo to start, the count has to be over 1.0 When my counts are flat, the neutraphils are down at 0.001-0.01.  Anyway, on the Thursday I was flat, 0.03. Friday, 0.18 Saturday .027 Sunday 0.46.  Dad had a word with the white coats.  GOOD TO GO!

The next x 22 bit

Grandad drove down to fetch dad and me while mum and Kayla cleaned the house.  Granny had gone back home for a little bit, but was back home soon after I arrived home too. Needless to say my arrival home was much the same as before.  Black-Eye Peas thank you very much! Let's dance!

Being home in my own bed was fantastic.  Although I still take a few days to reacclimatise to my home surrounds, which is odd.  

At least this time I did not need to have Rosie come everyday to give me antibiotics.  She only came once which was to take red juice from my wiggleys. Rosie called mum and dad later that day and the good news was that my bloods and neutraphils were 1.89!  

During this holiday break at home, we discovered I have developed a side effect of the chemo treatment. We were taking Kayla to a playdate at one of her friends, Archie.  Mum and dad decided I should go along for the ride and meet Archie's pet pig, Truffles.  In fact, Truffles sent me a picture of his trotters for my wall paper. Very sweet! Archie lives in Harrow-on-the-Hill which is about a 30 minute drive from our house.  En-route to Archie, I gave out a bit of a gag, and then got horribly sick all over my new tracksuit from Aunty Vanessa.  A quick "pampers wipe" clean up outside Archie's house and I was ready to say hi to Truffles.  

Mum and dad had a cuppa with Archie's mum and we headed home while Kayla played with her future husband. Yes, apparently Archie wants to marry the best big sister in the world. Back in the car, I was not feeling myself and mum thought some Easter egg would keep me settled for the ride home. 

Oh dear.  Just before home, I brought up what was left in my tummy from earlier along with the Easter egg.  We were pretty close to home and the production crew who were busy filming a new Pimm's advert on our village green tried to stop dad driving through.  You can only imagine his response and ignored the poor chap trying to be very important with his gaffer tape and walkie talkie.  

So the outcome of this episode was the suspected side effect: Motion Sickness! The suspicion was later confirmed when making our way back to the hotel for round 3 when just about at our destination, looking pretty as a picture, I brought up everything I had eaten during the morning.  I do hope this motion sickness does not last long. Dad says I could use it to my advantage when I am a little bit bigger.  He has a friend called Kris who he says allegedly suffered from motion sickness as a young boy.  Apparently it was Kris's way of always getting the front seat when driving to and from play dates and parties. Sounds very suspicious to me.

Anyway, time flew by as usual, and although I was only due to be home for 4 days, I ended up getting a bit of a cold during my holiday.  This would have meant going back to the hotel and being stuck in isolation in my little room.  Mum and dad knew that was not a good idea, and spoke to some people on the phone.  This allowed me to stay at home for an extra few days while I got over my runny nose.

The next x 23 bit

So here we are back at the hotel.  It is still April, but it seems we missed spring completely and crashed straight into summer.  Summer has arrived early in London.  The weather has been quite incredible.  Luckily I have been able to enjoy a bit of it.  This is my third round of chemo.  In total it is 5 days, with chemo being given in two 4 hour transfusions on days 1, 3 & 5. It is one of the three chemo drugs from my first two rounds, but a much higher dose. In the first two round I was getting it twice a day, but only 3mg per square metre. I know, I thought the same thing.  Who came up with the idea of measuring chemo in square metres? Anyway, this time I am getting 3g per square metre! 

We arrived back on Monday afternoon and treatment started that evening.  Mum stayed over first and she had not been briefed for the change in chemo procedure.  Eye drops every 2 hours.  Not my favourite by any means, let alone when I have been so sound asleep and rudely awoken for eye drops!

Tuesday first thing I was hooked up again for another 4 hours. During Tuesday morning I did NOT feel very good.  I had broken out with a ghastly rash all over my head, spiked a fever second to none and was just feeling a little, actually, very broken!

I think mum was a bit stressed as I had gone from being quite happy to rock bottom within 12 hours. Anyway, by the time dad arrived, Helena the Irish blue uniform had put everyone at ease and explained my symptoms were par for the course with this round of chemo.

By the next day, Wednesday, I was on a rest day from chemo and back on form. The weather was fabulous and mum and dad decided to take me for a walk around London while I was still looking good with my blood counts.  Walking through the buzzing streets of London, from the hotel towards Covent Garden, I saw a side of mum I have not yet witnessed much of.  Mum seems to have a very aggressive streak.  

One only needs to ask mum and dad's friends Ian and JP about a night in a car park when some troublesome teenagers made a homophobic slur. Apparently mum walked straight up to one of said youths and left an imprint of her hand on his cheek.  Well, walking through the hustle and bustle mum was getting very worked up with the looks that some people seemed to be giving me.  There was one moment when she stopped and glared with "looks could kill" eyes at a young boy who was pointing me out to his sibling.  It's alright mum, they were probably trying to catch a glimpse of my strikingly beautiful eyes, which are of course, highlighted by my smooth head.

A part of the excursion to Covent Garden was popping in at the Disney store.  I have become quite a fan of Mickey Mouse and his clubhouse friends. This was particularly cool as mum and dad kept throwing more and more fluffy toys for me to hug and hold.  Christmas seemed to have come early! For some reason though, they kept on trying to give me Winnie the Pooh and EeyOre toys.  I don't really know much of Christopher Robin and his friends.

After Disney we went for a bite to eat. Gourmet Kitchen Burger. This was followed by an ice cream from an ice cream parlour which has made the news recently for serving breast milk ice cream! I didn't really get a chance on breast milk as I had to go pretty much straight onto formula when I was born. Remember the horrid time I had from day 2 of my existence? Anyway, I guess it all happens for a reason.  I would not have been diagnosed with this if I was not seeing my Dr QT for my regular checkups.

Back to the ice cream though.  No, none of us ordered the breast milk ice cream, but instead we shared a chocolate and pistachio cone. I must admit, I have become quite a fan of ice cream. I ask for it a lot! In fact, come to think of it, I have started to verbalise very well since staying at the hotel.  I have always known what I want in my head, but have had a hard time getting the words out.  It seems everyday now, I am adding new words to my vocal repertoire.  Of course my typing is at a high level.

Another thing which has been noticed, is my eyebrows and eyelashes have started falling out. Mum gets a bit sad with this phenomenon, but I know all my hair will grow back. I do hope they grow back as they were though, as I did have rather gorgeous lashes.

The next x 24 bit

Day 3 of round 3.  Not quite as bad as day 1, but I did wake up from a morning nap and milk feed only to coat poor lamby and the rest of my bed with all 200ml of milk which had just gone in through my nose tube. Kayla and mum arrived, both looking very well dressed for "just a visit".  I wondered if they were heading out to the theatre or something special.  I was busy having a nap on dad, when Lucy got mum, dad, Kayla and some of the other gang to go for an outing though the hotel. Suddenly the Disney store penny dropped.  There was a whole lot of Winnie the Pooh and EeyOre activity around. We sat in a room when all of a sudden who should appear, but Winnie the Pooh and EeyOre. IN REAL LIFE!

They are rather big those two. Winnie clearly eats too much Huny, and EeyOre must be a lot of hands. I am not sure if donkeys are also measured in hands like horses, but they should be. I know that because Kayla did her school talk on horses. Needless to say I was a bit nervous of these two friends at first, but in true character I was the star of my very own show and eventually would not leave them alone and definitely got more hugs and cuddles from them than any of the other hotel guests.

So now I am about to start day 5 of my treatment which ends late tomorrow morning sometime. From there, it will be anything from 10 to 15 days of recovery before hopefully heading home for another short holiday from the hotel and round 4.