Sigh.....the honeymoon is over

Friday, May 25, 2012

I actually went home yesterday because my younger son, Luca, was falling apart.  That sweet boy has a burden to carry in this journey as well.  As we drove home together for the first time in 10 days (which is an eternity for a 7-year-old) I asked Luca, "What are you feeling honey?"

Through teary eyes, trembling lower lip, and quivery voice...."Mama, I just really don't like not having someone to play with;" shoulders slumped over and big alligator tears began rolling down his sweet chubby wind-reddened cheeks.  "I MISS MY BROTHER!!!!"  Is what this heartbroken boy was trying to say.  "I am scared that he will not be able to play with me ever again."  Hang on little Luca...Mama is here!!!!

Yesterday (Thursday May 24) Dillon was full of piss and vinegar...as my dad would say.  (My dad is known for having a saying for every occasion. :)  Ornery, energetic, hungry, playful, talkative......UNTIL HE WASN'T.

Big D had to summon superhuman courage and strength because today he had to get his port access changed.  The port is an implanted tube that is in his chest just under the skin.  It is used to give meds, chemo, and take blood (no more needles...EXCEPT  when it has to be changed out every 7th day).  Oh, poor Pickle has worried about this day since BEFORE he got the surgery to place the port, and today was the day.

Image a snap...the two sides.  One side is under D's skin with a tube connected to it that runs straight up and into his heart..  When the port is not accessed there is just a bump under his skin...the flat 'snap' that is implanted.  When the port is accessed, they put the other half of the snap on, which contains a needle in the middle on the side that touches the skin, which fits into the tube that is in the middle of the 'snap' imbedded in Big D's chest and the back side has a tube, which is used for blood draws, IV line, and medication administration.  

The descent began with the nurse removing the first access to the port.  He was giddy, elated...FREE!!!  He ran a little without his pole.  He showered for the first time in days.  He stayed in that shower just groaning about how good the hot water felt running over his skin.  Then reality set in.  The nurse came in to put on a blob of numbing cream or magic cream as some of the nurses call it.  It numbs the surface of the skin so he would not feel the small needle poke when they re-place the port.  Well, his anxiety started as soon as that cream was on.   He began by being quiet and withdrawn.  Anne Contreras (a classmate's mother) came bearing gifts; Carol and Gail from Pro Musica came and played him some beautiful music. As the songs wore on, he became more anxious.  He began hyperventilating and getting tingling arms and legs (lack of oxygen).  He trembled a bit and finally...he threw up.  Our brave and ever powerful D was crumbling under the pressure and fear of the pain of that darn needle stick.

Sean and Nana listening to Gail and Carol

Carol (in black, Dillon's CHAMPs coach) and Gail (the head of Santa Fe ProMusica)

Dillon trying to enjoy the music, but so very very nervous

In comes the nurse with the port access.  He turns white, he trembles (his Nana talks him through it with a beautiful and fun visualization of his boating trip about a month ago to Elephant Butte)....and ...and....and......

"THAT'S IT???????  Wow, that was not so bad!!"

Today Dillon learned that his mind is a very powerful tool in the fear factor.  He learned that he can get himself worked up emotionally and physically just by worrying.  He also learning that by keeping his mind busy during stressful times that it goes a lot easier than it might otherwise.

Note to self.....practice visualization cues and stories to help BIG D cope with his fear of pain.

Friday, May 25, 2012 (day 6 in the treatment protocol...day 1 was his first chemo treatment)

Vomit, medication, sleep....REPEAT.  That is pretty much a summary of Dillon's day today.  Everyone was surprised by how good he looked, how well he was eating, how much energy he had after chemotherapy on Sunday....well that honeymoon is OVER.  The nurses said, oh yeah sometimes it takes 5 or 6 days for the side effects...well today was day 6.  Right on schedule.  Poor D is so incredibly terribly horribly miserable today...all day from dawn until dark.

What a helpless feeling....my sweet boy staring into my eyes as he rouses from a medication-induced sleep..not saying a word, no facial expression...just staring, unblinking.  Those eyes were screaming at me...."MAMA, PLEASE MAKE THIS STOP, PLEASE MAKE IT GO AWAY, PLEASE DO SOMETHING, ANYTHING TO FIX THIS!!!!!"  

Oh my baby boy, how I wish I could...how I wish it were me and not you...how I wish I could do something, anything to ease your discomfort even just a little.  The best I can offer you sweet boy, are my eyes to stare into, my hand to hold, and my everlasting undying love and admiration for you.