Thursday, May 28, 2009

Too Much Toast!

Initially, Aria was given a 28 day course of steroid (Decadron, which we call deca-Drama) treatment, followed by monthly steroids for 5 days twice a day. That may not sound like a lot, but let me tell you, these steroids are really awful. People told me repeatedly how ‘hard’ the steroids were. I kept asking what ‘hard’ meant. I craved examples of what kids were like and no one seemed able to draw me a really decent picture of what to expect. Responses like, “Oh I don’t know. They just get so fussy!” or “The cravings are just incredible. All so-and-so wanted was salty junk food.” or “My son would just become this little terror!” were very common. Dr. Trobaugh told us to be prepared that Aria would be irritable, perhaps withdrawn, weak-like and just ‘different.”

It has been my experience that the moment she takes her first dose of steroid, a light switch goes off and she becomes, indeed, ‘different.’ It is somewhat subtle in that she doesn’t become this raving mad lunatic but rather she has moments in the day when all seems fine and dandy and then suddenly, out of the blue, something will set her off and she becomes an emotional train wreck. My favorite example and certaintly one that is as transparent as it gets happened last summer. Aria was thrilled to be going swimming in our pool. This activity gave her so much joy. It was hands down her favorite thing to do. So we were all swimming and having a great time when suddenly she got splashed! I’ll point out the obvious here: we were in a swimming pool filled with water! Well, you would have thought by her screaming that she had just been doused with hydro-chloric acid! She was inconsolable. “I’ve been splashed! I’ve been splashed! In my eye! I’m wet! I’m wet! I’m wet!” It was so shocking that Doc and I literally did not know what to do for a moment. We just stared at each other. Then without saying a word to her, we took her out of the pool, wrapped her in a towel and placed her in the sun on a lounge chair where she almost immediately fell asleep.

We have learned not to follow through on the temptation to try to rationalize the situation or ever reason with her. She can get so irrational and unreasonable that it is a complete waster of breath to convince her otherwise. We’ve learned to simply hold, rock with her, speak gently with her, coo and cuddle her. One of two things typically happens after such an episode and she is comforted, calmed and filled with a sense that she is safe. She either falls asleep or she finds something to make herself laugh like a poop joke. It is the most extraordinary experience. I have never in my life laughed so hard and felt more exasperated too.

This email was the very first example we had of what was to come in terms of her steroid reaction. She had been on steroids for a little more than 2 weeks.

Subject: Too much toast!
Date: February 3, 2008 7:59:04 PM PST
This morning, Sunday February 3rd we had our first real glimpse of
Aria's emotion due to her steroid. This steroid, by the way, is a key
component of her chemotherapy protocol and unlike performance
enhancement steroids it does not make her stronger or hyper. In fact,
just the opposite is true. Aria is weak, easily fatigued but her
emotions can travel the spectrum in a single moment and that is what
we saw today. We were also told that she would crave salty foods and
junk food, which is definitely already happening. All day yesterday
Aria was craving a cheesie burger and french fries from McDonald's.
UGH!! She wasn't allowed that food and she was pouting about it all
day. She's also been craving mac-n-cheese, which is also a junkier choice
and something she wants breakfast lunch and dinner. We're getting to
the point in her diet where we have to enforce variety and high
calorie, high protein options. We have all kinds of suggestions and
wonderful recipes that she wants absolutely nothing to do with. It is
so transparent, which makes it easy but at the same time it is very
challenging because the foods we are suggesting truly don't sound
appetizing to her. Just to give you an idea, she is not even
interested in chocolate OR ice cream. This is positively unheard of in
Aria's world. She used to wake up asking for a little piece of
chocolate to start her day. So the fact that she refuses it when it's
offered to her is a massive change!

Yesterday, Doc encouraged her to try some toast with butter since
we're trying to keep her diet mild. Reluctantly, she tried it and
actually liked it. This morning she wanted noodles and junk food to
which I said no. After some tears and bemoaning, "Mama, you hurt my
feelings!" she decided that a little toast would be ok. So I toasted
and buttered 2 lovely pieces of bread and gave them to her. Well, to
my astonishment, she burst into tears! Sobbing, she said, "There's
too much toast on my plate! Mama (screaming) you put too much toast
on my plate! Waaaaaa waaaaaa waaaaa!" Doc and I looked at each other
in amazement. Doc then said something to the effect of, "Hello

I promptly took the mountain of toast off of her plate leaving only 2
triangles of toast, which she proceeded to inhale. No sooner had I
put the other 2 offensive pieces of toast on another plate, she was
asking for them! Right now it is all so transparent and easy to
understand. It's almost funny and in some ways it is funny. Still,
there is always the nagging reason for this situation and that often
brings humor to a grinding halt.

It is now Sunday evening and I am very happy to report that we had a
lovely day. Aria was in pretty good spirits most of the day. She was
starving for that junk food all day but I managed to persuade her to
try other things. I think it went fairly well. She complained a lot
less about her tummy being "not uncomfortable", which means that it's
sour and cramping. Her new thing with regard to food was that she
would eat something, say some noodles and within a handful of bites feel
full and I mean really full. She would whine about it, "Oooooooooh, my tummy
is so full....I ate too much noodles!" Then 10 minutes later she'd ask me about j
unk food and complain that her tummy was "grumbley" and hungry again. I also
noticed that her belly is distended and tight...a little bloated perhaps and due
entirely to the steroids I'm told. Tomorrow I will consider how to make her
smaller portion meals with some kind of variety and lots of them. We'll see.
11 more days of the steroid, but who's counting???!!

My love to you all! ~j

This is Aria about one week into the steroid treatment. She was bright eyed and cheerful.

This is what Aria was like at the end of her month long steroid treatment. For the last week and about 2 weeks afterward, she was completely withdrawn and sullen. She stopped smiling and her eyes no longer twinkled. It is an understatement to say that it was hard. The truth is, it was horrible and it was scary.

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