Day of Release and Refresh

Sunday, June 24, 2012

I know all of you wait to hear how Dillon is feeling and how his days go.  So I will start with that tonight.

Dillon had a day full of coughing, which was exhausting and dehydrating.  The doctor is fairly certain that the chest tumor is the culprit, not that he cannot breathe but that all the mucus tissues and such are irritated and thus his cough reflex kicks into overdrive to cope with that.  The mass is now so big that it is extending up next to his trachea and collar bone.  If Dillon lies flat it can be seen and felt.  When he came out of surgery on Friday I saw the bulge but I really had no idea it was THAT big and that close to the surface.  It actually took my breath away and I was frightened and nauseous at gently feeling it with my fingertips.  With the significant increase in coughing today, the doctor decided to go ahead and start a high-dose steroid for a few days to see if the mass will shrink in size a little while we wait for the new chemo cocktail to arrive.  We still don't have the final report on the bone marrow or the lymph node but I am told that they did see some questionable cells so another level of analysis has been ordered, which takes 5 days.

Otherwise Dillon had a great day.  There were a few visitors today.  He is generally reluctant to accept visitors but I insisted he not "hide" from his friends.  They ended up having a great time and the visit lasted about 5 times longer than I expected....so that was a great distraction and a great motivator.  Below you will evidence of the love, devotion, and support that Dillon's buddy Finn has for him.

Another bald head, in solidarity

These boys were so genuinely happy to be together today

Dillon requested a stuffed sopapilla this evening with green chile on the side.  He ate about half and enjoyed the spice....which is a huge step in the right direction.  He has been eating only very simple and plain foods, so to have a craving for something stronger and then to have it be something that he used to eat routinely just made my heart rejoice.

He also had his port access changed this evening.  They remove the needle and tubing that supplies his fluids, nutrition, and medications and then place a new one, to help avoid infection.  For about 2 hours this evening he was tube, cord, and wire free!!!! I'M FREE he cheered and asked to go for a walk.  He walked farther this evening than he has all week.  I took a wheelchair with us just in case he got tired.  He did, but he wanted to keep riding around even after his legs could take no more strain.  We cruised downstairs on the elevator, went outside for some fresh air, watched and listened to the helicopter take off, and then headed back upstairs for some R&R before they had to re-access the port.  He did so very well in expressing his fear and his worry and his anxiety tonight.  I also did well in being empathetic and then distracting his mind.  He only got upset right before the actual needle poke and then it was just a few tear-eyed blinks, a ragged expression of his disdain for the negative anticipation that builds in his brain....and then he was done. 

All in all it was a fabulous day.  Dillon's Gramma Marylin (Sean's mom) is also here for a few days sitting in with Dillon and entertaining Luca.  Nana and Grampy delivered some more of Dillon's favorite PJs, plus a surprise of a couple of very cool pillow cases.  We are personalizing the room more this time around because of the extended stay.  I told Sean when we get out of this place we are gonna have to rent a U-Haul to get home.  I expect each and every one of you to be here on that day to carry boxes for us.....hahahaha!!!

Oh yeah....when this happened earlier I said to Dillon...."I should put that in the blog" so here I am doing just that.  Luca L. (a classmate of Dillon's) and Finn brought Dillon some balloons today (By the way...they DO NOT allow latex balloons in the hospital at all).  One of the balloons is a great big cute monkey face.    This evening while I was sitting with Dillon on his bed mentally preparing for the port access needle, it suddenly became a little darker in the room.  We both looked up and saw that the big ol' monkey balloon had floated over the light in the ceiling that is directly over Dillon's bed.  I said...."Hey Dillon, it was an eclipse!!!"  He laughed because the last time we were here there was an actual eclipse (remember that in May??) and we went outside and watched it.   Just a little funny thing that happened today.  Like the fireworks last night....the loveliness of regular events in life.