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.



Naturally, I have been my cheerful self all, but oneday, when I needed some red juice and some orange juice into my wiggleys. Not that I was a niggley noo, just very tired.

It took ages for my neutrophils to drop down below the all important 0.5 threshold. That too, made mum and dad think that I could go on holiday early. However, the bad news broke on Monday that I had dipped below to 0.16 and then today to 0.07.  I am now well and truly neutropenic.

This is the time when mum and dad and all my friends mum's and dad's are a bit edgy. Whilst we might look like we are doing alright, we can come down with very horrible infections. These are generally infections from inside our bodies rather than infections from outside, but visitors still have to be very vigilant. All too often, as we have learnt during our time here, it is the infections post chemo which call on the angels. Some angels help us get over the infection, and other angels take us away.

Speaking of Angels, dad was playing around on the computer last night and thought it would be fun to make a movie of our summer this year. Here is the trailer...

The next x 26 bit

Apparently there has been a run of Bank holidays here recently.  Normally mum and dad get excited about Bank holidays, but everyday, weekend and Bank holiday is just another day for them at the moment. For my big sister though, a lot of Bank holidays means not too much school. Not that she minds too much, as she loves school. Well, most of the time. She loves the playtime, seeing her friends and giving her teachers hugs. I know she doesn't particularly enjoy the homework, but I keep trying to tell her it is important!

So this last Bank holiday, mum and dad were able to get a room at a charity home run by The Sick Children's Trust. The house is really close to the hotel and it meant that mum, dad and Kayla could all be really close to me and each other for the whole long weekend.  I really loved and love having Kayla come and visit.  She is a hit with all the other children here and all the uniforms too. I overheard mum and dad saying how how similar we are, yet so different.  I guess we just have different approaches to turning on the charm.

I had to play my part during the long weekend too. I would have extraordinarily long daytime sleeps, generally over lunch time.  This would allow mum, dad and Kayla to take a stroll to Covent Garden or The British Museum for a change of scenery and a bite to eat. In the evenings, I would make sure not to play "silly buggers" as dad would say, and go to sleep promptly at 7pm.  This would give the rest of the family 3 hours to have dinner together before mum or dad needing to be back for my 10pm obs and meds. Luckily I am mature enough to "play ball" and let them have the time together.

The next x 27 bit

So as I write this I am on day 15. There is a holiday date of the 7th May on the big white board where all the uniforms sit, but I am not so sure right now. I sit with them sometimes and play on the computers or pretend to fill in paperwork.  It's not really paperwork, it's more like colouring in, and a lot of the "paperwork" the uniforms do seems to be the game of linking the dots to make curved drawings. Easy!