Losing time

Monday, June 18, 2012

It is so surreal to be here again.  It is like we skipped May and now June.  I just signed some admission papers and the date says it is June 18.....what????? June 18...it was just May 18 a few days ago.  How did that happen?

Looks like we will be here AT LEAST a week, maybe even 10 days, depending on how things go.  My parents and Sean's parents are immediately available to help....Sean is working and enjoying time with Luca, and will come see D as well.  Its a darn good thing I over packed.  When we left the house with the pile of stuff yesterday I felt a little silly.  What if we only stay overnight and I packed a half ton of stuff.  When we arrived at the ER at UNM yesterday you should have seen the people watching us go by with our suitcases and pillows.  I imagined them whispering....hey, those people missed their turn to the airport and ended up at the hospital :))

Luca is in tie dye camp this week.  He had wavered on wanting to go.  He had such a blast being his completely physical self last week in circus camp that he was a little skeptical about a crafty camp this week.  He said, "You know mom, I am not the kind of guy who likes to sit around all day doing crafty stuff." Well I got a call this afternoon from a pizza guy who said I had forgotten to pick up my pizza last night and that I was going to have to pay extra for that....OH NO that is not a pizza guy, that is Luca.  His infectious laugh burst through the phone and my heart soared with the joy that this boy can bring so easily.  He had news to share....after the pizza order was worked out (wink wink).....he LOVED tie dye camp.  He rattled on and on about how he did it and what colors and then he listed the items that he came home with today, and it is only the first day.  SUCCESS!!!  Of course, in classic Luca style....he inquired about brother and when I said he was "medium" not great but not terrible, Luca's voice dropped and he sounded sad.  "Poor brother.  I hope he feels better tomorrow."  Luca's first question last night when I spoke to him after we were admitted to a room was.....what color is it.  There is yellow, red, and blue and Dillon said he did not like the red last time we were here.....so Luca wanted to make sure Dillon was in a room that was comfortable and soothing to him.  In fact, he informed my mom that he thought if there was a kid in the room D had last time, that kid should be moved because that is "Dillon's room".   Sweet, innocent, powerful love of little brother.   By the way.....the room is.....you guessed it.....RED.

Dillon is sleeping a lot today.  He is now on IV nutrition as he cannot and/or will not eat because of the sores in his mouth.  He is also on a pain medication pump for a constant low-level of pain medication to take the edge off and he can then "boost" once every couple of hours as needed by pushing a button.  He feels pretty good about the fact that if he needs more medicine he is in charge of just doing it and not having to ask.   No, no...he cannot get too much.  It only actually delivers a dose once every couple of hours.

It is almost 8 p.m. and we have not yet gone for the CT that was supposed to happen at 6 p.m.

Tomorrow is still chemo, spinal tap, and bone marrow aspirate.  We are all anxious to get those results to see how 'effective' this first portion of the chemo protocol was and what the next step is on that front.  The other mystery is still this infection and an unusually high heart rate and the darn mouth sores.