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.
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
