Hulk Smash!!! Ainsley Smash!!!

So we are nearing the end of the daily steroid dosing for chemotherapy.  After tomorrow we will only be giving them to her for a few days each month, rather than twice a day every day.  Steroids have definitely had their effects on Ainsley. 

First of all, the hunger.  We've spoken about it before, but she seriously wants to eat around the clock. Not just anything, she is LOVING deviled eggs, scrambled eggs, yogurt, crepes, ham, any cheese (cottage, cheddar, etc), goldfish crackers, cereal (Chex please!), macaroni and cheese (the regular type--not the Phineas and Ferb kind, they don't taste right), and chips.  She is craving protein more than anything, which makes sense because some of the chemo is targeting the breakdown of certain proteins.

Next, her body hurts.  When we went into the hospital for one of her first few treatments, the nurses and doctors were surprised that she was walking in on her own.  They said most children's bones hurt so badly that they will not walk.  It explains why she doesn't want to do much more than lay down each day.  We were over the moon the other day when she got up to play with her sisters for twenty minutes. 

Body changes.  Anyone that has seen someone with Cushing's Syndrome or who has taken steroids for prolonged periods, has seen the Moon Facies (puffy, swollen cheeks), Buffalo Hump (fullness over the back of the neck), and generalized body fullness.  It's tough to see my little girl change so dramatically in just a few weeks.  If you see her you may not recognize her.  Of course, there's also the hair loss.  It's about an inch or two long now and thin all over.  A lot of scalp is visible on this girl.

The 'roid rage.'  Oh boy!  They warned us about this.  We expected it, planned for it, and it still surprised us.  Emotionally labile for sure.  We are okay as long as we can guess everything she is thinking or may want...and make sure to have it on-hand at all times.  So, as you've probably guessed, we strike out quite regularly.  We get our sweet little girl's voice for an hour a day.  For the rest of the day we get "Ainsley Smash!!!"  That's a shout out to all you Hulk lovers--"Hulk Smash!"  Ainsley's awesome buddy Bowden loves Hulk Smash!  Aunt Becky sent her a Hulk Smash pillow!  One of the most memorable was a late Saturday night when she decided she wanted fish crackers.  I had been to the store that day, but those were definitely not on the list.  I told her we didn't have any and she screamed "you are the worst Dad EVER!!!!"  She followed that by telling us "I want new humans!" (Someone has seen Bolt a few times?)  That was where a lot of the screaming started.  If the answer is no, then the natural response is to DEMAND, in a louder voice.  If that doesn't work, then SCREAM YOUR DEMAND.  Especially if the answer is, "Ainsley, we don't have that and the store that does is closed."  That is when she screams the LOUDEST because that will certainly change everything.  As I'm writing this, we just had a battle over which type of chips she wanted.  Not having the chips she wanted in the house certainly made things worse!  Who knew she didn't want the kind that she had been wanting for the past week?  This Daddy should have... ;-)

Here's the progression in picture form:

Ainsley's Birthday, 3 days before diagnosis

Hulk Smash!  The doll Aunt Becky sent to her, about 1 week after treatment started.

Ainsley leaving the hospital Sunday night, about 3.5 weeks after diagnosis.