Day 41.....Halloween at Brent's

 Tuesday, October 30, 2012

It was 2:30 a.m.  I had just laid down next to my husband and put my hand on his chest.  Feeling his skin and his heartbeat was very calming.  It was the 4th time up with Dillon tonight to administer meds . Yesterday was a terribly nauseous day and the pills either kept coming up and had to be re-administered or just got pushed later and later so we ended up having to do 4 doses overnight; at 11:30, 12:30, 1:30, and then 2:30.  As I lay there I realized suddenly that my entire body was on high alert, almost levitating above the mattress; every muscle was tense and ready to bound out of the bed at the first sound of distress from across the hall where my boy attempted to go back to sleep after being woken up for the 4th time.  HUMMM...maybe that is why I am so incredibly worn out.  Note to self....RELAX!!!!

Here are a few pictures of our Sunday Brent's Place Halloween party.  Dillon used just about all of his energy getting ready, so he and I only stayed for a few minutes....followed by an emotional melt down from being completely overwhelmed by the people, the attention, the disappointment....and then a 3 hour nap.  Sean and Luca stayed a while longer playing games and eating party food.

Buckley Brothers Halloween 2012

Luca with a bloody nose and black eye from his rough hockey game

Scary Dillon, Sean, and Shari

Shari is a cat (Luca did the painting) and Sean is a rooster

Dillon is currently taking between 23 and 30 pills every day.  He also has 2 IV meds that I administer and his overnight IV nutrition and a steroid cream twice a day, and 45 minute mouth care sessions twice a day.....it is a full time job....and then there is all the cleaning. Eating is still a huge issue.  We are playing with lowering his IV nutrition and adding an appetite stimulator to try to jump-start his food intake.  Yesterday, for example, he ate 2 bites of chocolate chip cookie and 2 strawberries in a 24-hour period.  He is drinking well....at the moment his favorite things are Limeade and Hot spiced cider.  Monday was the first time Sean and Luca went to the clinic with us.  GOOD NEWS>>>>Dillon did not need platelets or red blood cells on Monday. His counts pretty high and all of his other lab were stable......which means we don't have to return to clinic until Wednesday morning. 

This mural is in the Walgreens in the hospital...AHHH camping

Boys in the exam room.

 Luca's newest hobby that he learned during his last visit but I forgot to post......knitting hats on this little circle loom.  There is a volunteer that comes to Brent's every Saturday morning for lessons and with supplies.  Here is Luca's first hat.  He started on Saturday morning at about 10 and by Sunday at noon it was done.  He has decided he is going to make bunches of them an sell them at a crafts fair.  He is currently saving up money to become an airplane pilot when he is a teenager :)))  Oh the sweetness of dreaming "what to be when you grow up."  I love that part of childhood.

The next event at Brent's was last night.   A group of volunteers prepared a community dinner (which happens every monday) but the special surprise was a magician that both showed and taught tricks all evening.  Dillon slept through the whole thing, as he was exhausted after the trip to the clinic   Luca and I took a plate of food up to Sean and then went down to enjoy the fun.

Luca and some other Brent's kids learning magic.

NOW>>>>finally it is tuesday and Luca and I went on a walk to a park down the street.  It was wonderful to be out in the fresh air and sunshine.  Sean stayed behind with a sleeping Dillon and did the daily cleaning.

Fun slide.

Sweet little community garden in the corner of the park.

Really fun and innovative park.

Tomorrow brings a clinic visit at 10:30....and most likely platelets or red blood cells or both (which takes 4 or 5 hours for both).  We were told that the kids can trick-or-treat in the hospital...HUMMM that should be interesting.  Then back home to rest up for a ghoulish evening.  There is trick-or-treating within the apartment complex (there are 16 rooms and about 6 offices which I think will be plenty for everyone).  Another volunteer group delivers dinner at 6 p.m. so we don't have to worry about cooking.

Having Sean and Luca here is such a blessing, a treat, a sweet lovely time.....and at the very same moment an added stress and complexity that is sometimes extremely taxing on both Dillon and I.  We all expected some version of that...it just feels a little sad that we cannot fully enjoy each other and our time together....but I know that will come.  We keep plugging away, day in and day out, and time passes by, and things improve, slowly but steadily.