terrible twos on steroids

Literally.

One of Charlotte's chemo drugs is dexamethasone, which is a steroid.  It's not technically a chemo - but it's used as chemo - and has been very effective in treating leukemia.  In fact, studies have been done, where only dexamethasone was used, and it had a 60% recovery rate.  It's probably the best weapon in this battle.

The side effects of dexamethasone are moodiness, irritability, sleep disturbance and increased appetite (Stefan has been a short order cook for the past week). (there are also ulcers, heartburn and aches and pains).

Now, Stefan was on this drug after both his surgeries (to reduce swelling).  I thought I had actually written a blog about it, but looked back through old ones and couldn't find any.  We actually ended up naming his alter-ego.  Picture the hulk.  That was pretty much Stefan on steroids.  So at least we had an idea of what we were in for.

Combine that with being two, and not being well, and it's made for some fun times!  It's very tricky finding that fine line between when to be firm, and catering for your sick child. 

Our daughter has quite the tv addiction right now.  After a week in hospital where it was on all day, and with her still having pretty much no energy - it's hard to find the right time to turn it off.  Baby steps.  So we have been firm on tv being off for dinner time - a fair request I think.  But this results in crying for the tv all through dinner.  Sunday's weekend puking incident was a result of this (worked herself up).  I still think we did the right thing - even if it meant puke.  We have to start somewhere - and I think mommy and daddy becoming super lenient is as scary as being poked and prodded by doctors and nurses.

So, walks and car rides are pretty much all we can do now to get a break from the telly.  We have a playroom full of toys, books, puzzles, play dough, you name it - but she has zero interest right now - chalked up to being sick and the steroids.  The Dr. said over the next couple weeks her energy should return.

We have a couple wake ups in the night asking for food and tv - we oblige with the food, but not the tv. 

Tomorrow's agenda is a bone marrow biopsy and more chemo.  This means our girl has to fast from 2am to her 8am appointment.  Not looking forward to saying no to our girls requests for food and drink starting at 2am - which will be accentuated by her steroids!  Poor thing!  We will have a lunch bag full of her favorite foods ready for when she comes out of sedation (pasta, quinoa and perogies - all with cheese!). 

At least the steroids end Saturday, it will probably be another week or two until it's out of her system.  On the bright side, it has helped add some weight to her tiny frame as preparation for the next round of treatment.  She is at an increased risk of having a feeding tube during her treatment - so we are giving her as many calories as we can.  Hoping for a non-pukey weekend!