Determination

Monday, August 13, 2012

Dillon is oh so tired these past few days.  As Sean pointed out to us at the dinner table tonight...the difference between being home and being at the hospital is HUGE.  Just the energy in the space.  At the hospital we are often alone for hours, soothing music or just the fan in the background, little conversations, some reading out loud....at home, there are chores, dishes, hustle and bustle, noises, voices, visitors, questions, responsibilities.  Those things alone must be overwhelming to Dillon....not to mention that he just went through another very powerful round of chemotherapy.  One of the doctor's described it as an "atomic bomb."  YIKES!!!!

So, Dillon is tired.  He takes a few walks, he reads, he eats and wanders around the house, he has some conversation. We did a couple errands today and went out for a farewell breakfast with Luca.  In the afternoon he had a friend over for about an hour....and this evening he is COMPLETELY wiped out......it is an "I have to put my head down on the dinner table between bites" kind of wiped out....."I cannot hold my toothbrush long enough to do a decent job cleaning my teeth" kind of wiped out.  HOWEVER, Mr. Pickle is DETERMINED to have some fun, do some things he likes, do some normal things like errands with his mama, have a friend over on occasion, eat some favorite foods.  No matter how tired this child gets....he continues to plow through without rolling over and curling up into a little ball (which is what I imagine I would be wanting to do :))  He has to take 8 meds twice a day....without a blink of the eye and without complaint, he just sits there, somber, focusing, and goes through the little cups and pills one at a time and just gets it done.  I admire him each and every time.

So off to bed early.  We are reading LOTS of Hardy Boys books so we had a couple chapters of that and then to sleep.

Dillon had his first home health nurse visit today also.  It was first thing in the morning so he did not have to fret about it all day.  The nurses came, did some paperwork, accessed his port, took some blood samples, and then de-accessed his port.  We got a call this evening that his counts have FINALLY bottomed out....his white cells are very low so we have to be hyper-vigilant about germs for the next week or so to avoid an infection that could put him back in the hospital.  Restricted diet is in place to limit exposure to bacteria and he has to wear a mask outside the house at all times.  Visitors will be scrutinized for illness and lots of hand sanitizer will be delivered to each pair of hands upon entry.  This drop is supposed to happen...it is "good news"....it just comes later than expected by the docs, as usual.  Our family has come to the conclusion that pretty much everything that Dillon encounters and endures will NOT go as expected....his body is somehow different than the average...be it resistant, or too strong,  or just stubborn as heck.....so expect the unexpected....a little off course is the norm for this boy :))