Candy-floss and Chemo

If you read the last blog, you will know that we were looking forward to seeing the musical “Oliver” at the Edinburgh Playhouse – if Tabitha was well enough.  As far as Tabby was concerned, not going was never an option. The show was absolutely stunning in every way. Even better was seeing Tabby sitting on the edge of her seat, loving every minute and singing every word with not a care in the world. One of our best days since this leukaemia was diagnosed.

"Let the show begin"

Apart from “Oliver”, the last three weeks have been a lot harder than than we anticipated. The return to Doxorubicin and Vincristine has seen off the last of Tabby’s hair and to all intents and purposes she has none left. The alternate weeks of high dose steroids have really had a profound effect on Tabby. Moody, miserable and irritable – not a law firm – but simply the effect the steroids have on her. Equally distressing is the fact that Tabby has complete insight into her behaviour both during and after each course of steroids and is aware of how despondent and frustrated she becomes. Similarly, when she stops the steroids, she rapidly resurfaces again as our usual bubbly and cheerful girl as if awakening from a really bad dream.

On Sunday, for example, we had toyed with the idea of going to the Highland Show. Tabby was  very keen, I was less so.  Knee deep mud and cow poo did not seem ideal for a girl with short welly boots few functioning white blood cells. It then became apparent that Tabby’s desire to go was not a love of things rural but simply the opportunity to buy candy-floss. We did not go but instead spent the morning trying to establish where one could buy candy-floss on a Sunday morning!  Tabby was inconsolable. The effects of steroids again.

Sadly, Tabby’s last week of primary 2 coincided with a week of steroids. She had a lovely time at Katie and Freya’s party last Sunday running around and playing. On Monday, however, she got to school but felt too tired and weary to stay and for the last 3 days has had a really sore back. As a result, poor Tabby missed all the end of term games and parties at the school. She was terribly upset and we did not really get the chance to thank her teacher, Mrs Krumins , for all her help over the last six months. Last night Tabby’s back was so sore we  ‘phoned ward 2 at the “Sick Kids”. I thought we may be making another unscheduled stay in Ward 2 but following their advice regarding alternative analgesia she seemed to settle and had a fair night’s sleep. These last three or four days have been particularly hard and for the first time in many weeks she simply looked so unwell and frail.

99.9% of the time, we manage to maintain a form of normality, going to school, seeing friends and family and enjoying days out – all largely buoyed up by Tabby’s irrepressible good humour.   When Tabby is down and sore and unwell, it can be very difficult to keep a lid on the “What if?” demons.  It doesn’t bear dwelling upon.  You have to give yourself a shake, give her a huge cuddle and remind yourself that in theory Tabby is in remission and she has all the factors which would  indicate a good prognosis and cure. The only reason I feel able to put these somewhat gloomy thoughts on the blog is that having had her last dose of this course steroids yesterday, Tabby’s back pain is settling and she has once again re-emerged from her steroid induced malaise and is back to her usual cheeky and animated self.

 How can I get rid of 2 loose front teeth?

We have another five weeks of this “Delayed intensification no.1” before moving onto  “Maintenance Cycles” – for the next eighty weeks!

Finally we would like to thank Mrs Krumins, Mrs Meakin and Mrs Ryecroft at Mary Erskine School for their wonderful kindness and support over the last 6 months.

As ever thankyou for reading the blog. We have lots of nice things coming up over the next week or so and promise to report these next time.

The Lawsons