Day 133 - Stand up and fight

     Let me start by thanking Cristy for pinch hitting for me yesterday.  To be honest I haven't been able to take part in many of the doctor's appointments lately and as a result am not as educated on this phase of chemotherapy as I should be.  I felt that basically relaying everything she was telling me would essentially make me a ghost writer and figured it was time for her to come off the bench and put her heart on the page.
     As I've done on a few occasions previously this blog entry will contain more emotion than facts.  I think Cristy covered some of the facts yesterday, but if you missed it let's briefly recap.  Evan has had difficulties holding down his feeding tube.  This afternoon after physical therapy he went back to the clinic to have it re-inserted.  Until Wednesday, the date of his next appointment, Evan will be taking 7.5 steroid pills daily.  If my regular readers recall, steroids absolutely "melt leukemia cells" (the doctor's words, not mine) and are a crucial part of his treatment plan.  His fluctuating weight makes this feeding tube an essential tool for Cristy and I in order to get much needed calories into Evan's body; however, a fortunate side effect of steroids is an increased appetite.

Playing hide-and-seek before bed.

     The tube gives him some pause and triggers his gag reflex, but over time we're hoping he'll adjust.  Now for the emotional part of the blog that I promised.  Overall Evan is reluctant to test his limits, whether it be eating, walking or talking.  Could Cristy and I have changed this behavior had we supported him differently?  Or is this the case of a five year old struggling to cope with the daily bombardment of drugs, therapy and eating that we force on him?  These are just a couple of the questions that I have to ask myself when deciding how to handle each situation.
     This daily struggle has taken it's toll on Cristy and I.  She deals with his daily needs more than I do so naturally she feels more of the brunt.  This burden hasn't missed me completely.  I push and plead daily to inspire Evan to do the things necessary to improve his health; and when that doesn't work I yell and scream.  Not my preferred approach mind you, but if it keeps him within acceptable limits for weight and mobility then I can sleep well at night.  Some of the best parenting advice I've ever received is be your kid's father, not their best friend.
     I feel Evan's mobility hasn't quite progressed as quickly as I would want.  How much of that is mental vs physical is a debate and Cristy and I discuss daily.  There's no question that his core and leg muscles are stronger.  When Evan walks unassisted I don't know if it's a balance or confidence issue that causes him to wobble uneasily.  During PT this afternoon Cristy noticed how energetic he was, so much so that the therapist was surprised.  Not confirmed, but I'm wondering if the steroids have given him the burst in energy he needs.
     Tonight I felt that some motivational music was in order since I haven't added to our cancer playlist in a while.  In light of Evan's walking challenges I thought a good song would be Stand by Rascal Flatts.  The song itself gives a pretty decent glimpse into the psyche of the entire family right now.  We have good and bad days, but we'll come through these battles scarred and bruised, but stronger.