Home Sweet Home and Music

Friday, July 29, 2012

I left the hospital on Thursday at about 10:30 a.m.   My mom came to man the ship so I could have 24-hours away.  I had a few goals in mind:
1.   Spend some time with Luca at home.
2.   Go to the benefit concert on Dillon's behalf at Santa Fe Waldorf.
3.   Get some much needed banking, bill paying, and insurance paperwork done.

I am refreshed and happy to be back at UNM.  I completed all of my goals.

The concert last night was AMAZING!!!!!  Thank you to everyone involved, everyone that attended, everyone that wanted to attend or thought about attending....just thank you thank you thank you.  The genuine love and support that was flowing our way last night was palpable in the room.  Every glance, every handshake, every hug, every wink, every smile, just every single piece of energy was felt through-and-through by both Sean and I.  We were overcome with joy with the community that have become our extended family and the crutch that they are creating for us to lean on.  Like Sean said in his speech last night..."We could not do this without each and every one of you!"  He means that...we mean that more than there are words to express it.  I think everyone felt that last night.

Time with my lovey lovey Luca was soooooo refreshing.  That child....those of you who have the pleasure of knowing him would agree....has an infectious laugh and a joy and enthusiasm for life that just oozes out of every pore in his little body.  He can bring me to a place of being happy and relaxed in no time flat.  The snuggling I got last night just filled my soul right up to the top.  I was able to kiss him goodbye this morning at camp with a fulfillment in my heart and a smile on my face.  I just hope and pray that he felt the same way.  The statistics, as the social workers here tell it, show that siblings have a "worse outcome" emotionally than the ill child regardless of success of treatment; so whether their siblings lives or dies, the healthy ones suffer more emotionally in the long-run than the sick one.  I found this very interesting and am taking it to heart fully.  I gotta make an extra super human effort to make Luca's life as "normal" as possible, if not more special and significant than it would have been to counterbalance the effects of Big D's ordeal.  So I ask a favor to all of you that come into contact with my Luca Bear.....give him some extra attention, a hug, a wink, a little gift, ask him him questions, talk to him....lets not have this sibling be part of that statistic.

Oh yeah...the banking, bills, and paperwork were completed successfully and that heavy weight has lifted.

Now on to Dillon and Nana.  Those two are quite a pair.  Nana got Dillon to go downstairs and across the hospital; albeit in a wheelchair because he is too tired and weak to walk more than a few yards; to get a latte.  Yes yes, I know, latte for a child.  Come on now, it was decaf and he ventured out so that was definitely a fitting 'reward' :))  That is the first time he has left this part of the hospital since we got here almost 2 weeks ago....the magical powers of NANA!!!!
Then today when I got back I heard hushed talk about calamari.  Dillon is not a fish or seafood eater...but he LOVES calamari.   Before I know it my Mom says that she is going to get Dillon's dinner....and back she comes in about half an hour with calamari...of course she knew Luca would be here by then so she brought two.  I carved up a couple of mangoes, divided the little loaf of bread with dipping oil, and the boys had a feast. 

Dillon's mood has stabilized and he had a lovely afternoon visiting with Sean and Luca.  He was awake and talking pleasantly for 3 hours straight....YAHOOOOO the meds are working!!!!!

Sean, Luca and I got our first round of blood tests for the bone marrow matching.  Luca was HYSTERICAL but after much talking and hugging and reassuring he sailed through the needle poke like a champ...not to mention that he left with a whole bag of loot (books, a stuffed bird, some toys, a Gatorade). 

Big D's 5th day of the first type of new chemo is tomorrow.  He has had ZERO nausea and vomiting this week.  He is just so very extremely, exceptionally, tremendously tired.  He sleeps a good part of each day.  As he told Nana the other day after a particularly hard afternoon...."The only time I feel good is when I am asleep, so I just want to sleep all the time."  It certainly passes the day quickly for him and his body is in overdrive with the healing process while sleeping....so I think it is a great gift to be so sleepy.   And speaking of sleepy....I am going to bed......good night!!!