Planning Phase

 Thursday, August 9, 2012

Let me start with an apology for being "absent" most of this week.  Sorry Aunt Marilyn !!!! :))) I know most of you worry that my not posting means that crazy bad stuff is happening when, in fact, it is quite the opposite.  Usually when things are sailing right along, just normal day-to-day stuff in the hospital...I forget to post.  It is when there are details and changes and information to share that I think about posting.  My mother reminded me today that people want to know even the mundane daily stuff, just to keep up and get a sense of what is happening.

There has been so much uncertainty (i.e..they tell us one thing one day and then the next it is something else) about what the next step is in the process of getting to Denver. I have not posted because I did not want to confuse everyone.  As of now....still lots of confusion but we are slated to go to Denver the last week of August. The exact day depends on the results of Dillon's CT scan and bone marrow biopsy that are coming up on August 22 to see how "effective" this last round of chemo has been in obliterating the chest mass and keeping his bone marrow cancer-free.

In the meantime....Dillon is doing great.  Healthy appetite and happy outlook.  Today, for instance, Dillon, Nana, and Luca were in Child Life (a play room for all the kids in the hospital) doing crafts.  Dillon will tell you emphatically that he is not a crafty kind of guy....well low and behold the past few days he has been all about crafts.  It is so funny and charming to watch this change.  It is just like when the kids are little and they swear they love a certain food and then one day won't touch it.  Dillon and I have painted, done a paper mache project, and today's project cannot be divulged  because it involves a gift for someone and I cannot give that away :)) Dillon also met the resident therapy dog this week.

Bug the therapy dog at the hospital.

My dad made (per Dillon's very specific and emphatic request) a batch of Sloppy Joes and brought them down yesterday to have for lunch with Dillon. Grampy will do anything to please this boy right now :))

Last night Sean came for a visit because it was our 14th anniversary.  We decided to get Chinese takeout as a celebratory meal.  Dillon helped pick the dishes we ordered and off I went to get the food while D and Sean hung out a little.  I served up the plates and Mr. Pickle took a look, a sniff, and one bite of that plate of food and was done for the night.  Sean and I had to eat quickly and clean up because the smell was intolerable for Dillon. He got very nauseous, which lead him to want to get in bed and curl up under the blankets.  Sean rubbed his back for a few minutes and he was out for the night. 

Luca has been here 3 times this week and will come again on Sunday.

It is like the clowns in the VW at the circus...how much Luca fits in this tiny car??

Nana, Grampy ,and Luca are heading up to Montana on Monday for the long awaited road trip. They are going to celebrate Miel's 6th birthday (that is my niece, my brother Todd's little girl).  This trip was planned in January and Dillon and Luca were going to be gone for about 3 weeks.  The trip has been trimmed down to 10 days since Big D is not going and Luca will miss him and struggles emotionally a bit when they are apart for too long.  Dillon is terribly disappointed that he cannot go.  Miel called the other night and was so wishful that we could all come...."Aunt Shari...I wish EVERYONE was coming to my birthday."  "I know honey, I do too!!!!!" 

Dillon and I have been watching all kinds of Olympic events and marveling at the athletes in these sports that we have hardly even heard of.  Today we saw some horses prancing around....that is an Olympic sport...since when????  And women's BMX racing....GOOOOOOO GIRLS!!!!!!!

The events of last weekend seem like eons ago and with our fingers, toes, legs, arms, and eyes all crossed....we MIGHT be discharged this weekend......If I get my way we will leave first thing saturday morning but, since expediency is not something well known in the medical world, I am not holding my breath.

IF we get to go home it looks like we will be able to be home all the way until August 22...the day Big D is scheduled for his PET/CT and bone marrow biopsy.  

I will let you know what the schedule might look like as the time get closer.....EVERYTHING is dependent on the results of the above tests (if and when we leave for Denver, when and what the first set of treatments will be once we get there...etc etc.).  The long list of variables and unknowns is overwhelming as usual and I am learning to just hold tight to the present moment. 

Oh yeah...have you seen the photos of the street or business signs with names in our family on older posts....well, here is another one.

Copper is our beloved cat!!