Day 250 - Courage Beads Update

     It's been exactly one week since my last update.  Needless to say if you don't hear from me it's usually because things are progressing as expected.  I have a few notable updates since the last blog entry.

Dance off.

     Cristy spoke with the medical team last week and they see no reason why Evan can't begin school when the students return from winter break.  One of the NPs at CHoA suggested starting with half days and working our way up to full days at some point.  We have a few questions for the faculty around the timing of Evan's medicines, handling of bathroom breaks during chemotherapy and eating schedule around his meds, but at least for now these concerns seem pretty minor.  Evan is beyond excited to meet his classmates face-to-face and to start getting back into a more normal routine.

Relaxing on the best seat in the house.

     During Evan's chemotherapy appointment last week his NP consulted with Cristy again about removing his feeding tube and she agreed now is a good time.  It's one less thing for us to deal with at night and allows Cristy to get some sleep (assuming Nolan let's us).  Breakfast and lunch are still a struggle; however, he eats pretty well at dinner.  If he's lost weight it doesn't appear to be much.  I brought home some Girl Scouts cookies this evening and Evan really took to the Trefoils so I may need to invest in a couple more boxes.

One tube down, one more to go.

     Last week Evan received the first chemotherapy treatment scheduled for Interim Maintenance.  We have another appointment on Friday for a blood count check and if his numbers look good he'll go back for his next round of chemo on Monday.  His strength and energy levels haven't noticeably dipped so I'm not anticipating any surprises.  His overall appearance is probably as healthy as I can remember over the last 7 months.

     On the mobility front Evan is doing outstanding.  It's only been a week since I was commenting on his occasional reluctance to walk and already he's made great strides.  His physical therapist says he's way ahead where she would have expected and even over the last couple of days he prefers to walk without the assistance of his walker.  The biggest challenge is stairs, although as his legs and core get stronger this should become less and less of a problem.

     I hadn't really taken inventory of Evan's courage beads in quite some time and decided to check them out this evening.  Seeing the different colored beads and the sheer number of them reminded me just how much he's been through on this incredible journey.  His will and resolve remain strong.  I'll likely provide another update Friday evening with his new blood counts and the go/no-go decision for Monday.

Courage Beads as of 2/21/17.