Handling our ups and downs

We have so enjoyed our week "off" from chemo.  Caleb's hair grows fast, and now we can see the red showing through again!  I wonder if it will last?  I feel like his cheeks down-sized as well, with more time off from steroids.  He's always had a round head :) but steroids have really added puffy cheeks!  It's interesting to look at pictures from a few weeks ago and look at him, well, Monday and notice the difference.  He started steroids again on Tuesday and I felt like already at bedtime on Tuesday I could notice rounder cheeks.  Steroids cause fluid retention, contributing to very round cheeks!  It is quite possible to look at a child going through chemo and tell exactly what stage they are at based on the roundness of their cheeks. 

It's steroids week, and we are a day and a half in.  This is the week that I enter with dread.  Dread isn't a good way to do things, though, so I'm working hard to figure out why I dread this week so that I can hopefully handle it a little better.  We have to do this many many more times over the next 2 years and so I must find a way to get through. 

My perspective is where I begin.  I must remember to take things one day at a time and one experience at a time.  Standing at the beginning of the week and wondering how we'll make it to the end is not really a good place to begin :).  It's bound to be overwhelming.  Can I do this moment?  Yes.  Then I'll take the next one when it comes.

I also know that steroids make me afraid and anxious.  I'm learning that this has a lot to do with how we discovered Caleb's leukemia in the first place.  During the weeks leading up to his diagnosis, he was quiet and moody.  He'd get out of bed in the morning and play a bit, but then sit on the couch and say he was tired or cold.  He does the same thing when he's on steroids.  My mind and heart immediately fear that something is wrong, that something else is going on.  But really, he's just on steroids and he feels really crummy.  So long as I can remind myself of that, I think maybe I can keep my own anxiety down. 

Steroids make Caleb want to be alone, except in the company of me.  I've blogged about this before, and I'm entering this week with new energy as to how we'll manage that.  We have learned a lot already about what works, things like lego kits and headphones.  This week we have built a fort in our living room.  The kids were begging me to make a fort; they're still too young to do much more than pile up the couch cushions against the couch or coffee table.  Yesterday we rearranged the living room to make a fort complete with a roof.  I'm hopeful that our fort can be a retreat for whomever needs the time away from everyone else; a place to be away without leaving the safety of other's company.  I fit in it too.  :)