Jun 29, 2014

Steroidosaurus Rex

Steroids must be brewed in the pits of Sheol.

Since his diagnosis on June 2, Drexel has twice daily received a dosage of the bane of all of our current existences: dexamethosone.

"Dexamethosone" is now a word I may add to my midnight-toe-stubbing vocabulary.  That and "leukemia" /grumblegrumblegrumble

Drexel can't help it, but essentially this steroid means he acts like a completely different child.  Ever heard the term "roid rage"?  Apply it to a 3 foot tall, 28 pound, 2-year-old boy and you've got Rex over the past few weeks.  He rages, throws things, kicks, hits, shoves food so quickly into his mouth you'd think it were a living thing trying to escape, is incredibly demanding, wants food NAOOOOOOOWW, can't sleep (twice he has gone 36 hours with little more than a couple of naps), etc etc etc.

This is not how Drexel normally behaves.

I thank God above that this is not my child's norm, especially considering I've worked with children for whom this is the norm.  And I've seen the look on their parent's faces that I'm sure has been on my face these past few weeks: resignation reeking of desperation.  After a time, it is just one more time being screeched at.  One more time moving across the room to avoid chubby little hands that are looking to thump someone as an outlet for the extreme, uncontrollable frustration resulting from chemicals affecting the brain.  One more time internally screaming "I don't know what to do!" as Steroidosaurus Rex shows up like some kind of tiny drug induced form of The Hulk.  One more time trying desperately not to break down when Rex asks "do you still love me?" after a rage fit.

Drexel scares himself right now.  I can see it when he loses control, especially when he's going on 30+ hours of no sleep and is crying because he is so, so tired but "just can't sleep right now".  His emotions are so big, and so scary right now that he'll start to get angry about something and then scare himself because he doesn't know what to do with all of the anger, or frustration, or impatience, or whatever is causing excessive volume and/or tears at that exact moment.  He is only two.

I've worked with kids who behave like this daily due to psychological reasons, and have been pulling every tool out of my toolbox to work with him as if he were one of my clients.  The problem is that he is not one of my clients.  He is my son, and I know him when he is not on this *BLEEP* drug.

We have hope in this situation that comes with a date: July 3.  That is the last dose of dexamethosone Drexel needs to take...at least during this round of chemotherapy.  We've been trying to get the doctors to tell us if there is a chance he'll go back on it in the future, but they are very careful to not give us too many details about what his next rounds of chemo/treatment will look like.  It all hinges on the results of his bone marrow biopsy on the 3rd, as that will tell us how he has been responding to the first round, which will determine the next leg of treatment.

So for now, we assure him constantly he is loved completely and totally no matter what.  We remain as consistent as possible in response to negative behavior, and reinforce the daylights out of behavior that we want to see (just because he feels like s*** does not mean he is allowed to hit us).  We hold and cuddle him as much as possible (he really doesn't want to be touched right now), and walk endless paces up and down the hospital hallways when all he really wants is to keep moving.  We feed him as much popcorn and apple juice as he wants, and patiently wait out the rage attacks.  We join the chorus of endless prayers going up for our boy.  We remind ourselves that we only have to wait until the 3rd until this drug is no longer a part of his daily life, and pray for those families who deal with behaviors such as this on a daily basis with no end in sight.  And we wonder how many boxes of earplugs we'll need until the 3rd.  :P

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