Doing okay...different location

Thursday, June 14, 2012

Dillon requested the proverbially change of scenery today.....so off to Nana and Grampy's he went.  He informed my mom the day before that he was craving buttermilk pancakes, so when I dropped Big D off this morning she whisked him away to IHOP for pancakes and an omelet.  When they got home he went straight to bed...you know sitting up in a restaurant and then digesting food takes more energy than you realize....No Seriously.....that amount of up and about just wipes him out.


D and his grandparents had a great rest of the day that included eating, shopping at a nursery, picking up Luca from circus camp, and playing pool in the garage.  No nausea, just fatigue today, but his appetite remains strong.

I worked most of the day today in between phone calls from home health nursing to set up at home IV fluids for monday night.  Yikes....I have to be the one to hook and unhook the fluids.  This is in response to and in preparation for a whole battery of tests that are coming up on Monday and Tuesday.  Can you believe we are at the end of the first cycle/round of the protocol.  The results from the tests will determine the next course of action; what kind of chemo and other medications, as well as how often.  One thing we know for sure is that tomorrow (friday) is his last dose of prednisone, which is an extremely potent steroid that he has been on for the past 28 days.  They say once that works out of his system, then his moodiness and irritability and insomnia should dissipate.  It is terrible tasting stuff that is accompanied with another medication to counteract side effects so the Pickle is SUPER excited about it....2 less things to swallow...YIPPY!!!!!  We might stay at Ronald McDonald House Sunday and/or Monday night....but Grampy suggested a hotel as D has been cleared to swim in an indoor pool that is not crowded.  He is not very enthusiastic about this, as I am sure it just sounds like a lot of work and discomfort to him (he is such a home body and he really loves his room and his bed and his own space).  I just feel like having a base to rest at between the crazy procedure/treatment schedule on Monday and Tuesday would be more comfortable than sitting in waiting rooms and or cruising around in the air conditioned car all day long waiting for the next appointment time. 

Luca has been participating in circus camp this week at Santa Fe Waldorf and is wound up about his circus act performance tomorrow.  That kid learns so incredibly fast.  He learned to juggle, pogo, unicycle, spin plates, jump rope and hula-hoop at the same time, and many other tricks.  You know those people who have such strength and such a command of their body that they are good at everything they try....well that is Luca.  His physicality is definitely one of his assets and he uses it to his advantage. 

Next week is tie dye camp....an entire week of tie dying stuff.  One of Dillon's friends was in that camp this week and she actually sent a couple of really cool tie dyed napkins home for Dillon as a little gift.  Super cool!!!!  Thank you Emma!!!

We all went for a stroll to the mailbox and now the boys are requesting a little dessert after our super yummy chicken pasta salad dinner.

Tomorrow is the dreaded day 3 after......we will see what it brings.