Day 38

Thursday, July 12, 2012

I see a lot of interesting stuff at the hospital.  There are things that make me happy - like watching the 16 month-old who has been on our floor since January pack up his stuff and go home.  There are things that make me angry - like seeing the insanely large number of parents and staff who light cigarettes as soon as they exit the hospital doors.  There are things that make me feel lucky - like feeling the love we receive from family and friends.  And there are many things that make me smile - like watching Ari eat chocolate ice cream in bed at 9 o'clock at night.

But for the first time, I saw something that made me question this "world class" institution.  I ran the gamut of emotions when I walked by this disturbing scene.  I was outraged, saddened, mad, and scared.  I wouldn't have expected something like this in Boston.  I think I would have been shocked to see it even in the South.  And to make matters worse, this happened in the middle of the day and in a very public space. 

I quietly documented what I witnessed.  Out of fear, I ran by quickly so that nobody could place me at the scene. 

This is what I saw earlier in the "Patient Entertainment Center":

Should I report this?!  Does the Grand Wizard have a great grandkid here?
Daily update:

Ari's counts are all in normal kid range.  His ANC is at 4000 and his white blood cells and red blood cells and platelets are healthy high.  As the docs promised, this means we test the bone marrow one final time to ensure no leukemia cells have grown, Ari receives a lumbar puncture to double check his fluid is still clear (and simultaneously receives a nice large dose of meds), and then assuming all looks good, we begin phase 2 of treatment.  The fancy name is Consolidation 1. 

The tentative schedule (barring no fevers or sudden drop in counts) is tomorrow morning (Friday) will be the BM & LP and then either tomorrow night or Saturday morning the chemo begins.  This phase is going to be yucky.  The medication causes some ugly side effects and Ari may feel awful for the first week.  And then, once again, we wait for the meds to clear and his counts to rise, and maybe, just maybe, we'll have some time in our own beds before returning for the next phases of treatment (and these should be relatively quick and then we're done with the in-patient portion of the 2 year process.)

I don't want to get ahead of myself, but this is the current plan.  I will update you tomorrow evening after we receive results from the morning's biopsy. 

Have a good night!


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