A morning in the life

This week was 5 days of outpatient chemo.  We got into a little routine: 

I open the car door, get Andrew out of his carseat.  I slowly put him down, being careful not to pull his tubes.  I put his dragon hat on his sweet head.  I take his backpack full of fluids, and put it on my back.  Holding his little hand, I drag him around to the other side of the car and grab my ridiculously huge bag full of books, movies, ipods, and toy dragons and put it over my shoulder.  I grab the extra bag of fluids needed for tonight's backpack.  Andrew asks to be picked up.  I pick him up.  Brighty of the Grand Canyon (a book about a pack mule) comes to mind, as I trudge, back-aching,  through the parking garage.  Only a few more steps...

Room 107.  Pediatric Oncology.  It still stings.  Advertisements for groups for "Survivors of Pediatric Cancer" on the walls.    I flinch each time.  At least the receptionists smiles instead of grunts (like the last place).  Another bald two-year-old child is inside, with her familiar "smiling on the outside, crying on the inside" parents.  We smile.  I wonder what her story is.  They probably wonder the same about Andrew.  I am still not chatting.  So it ends there.

I fill out paperwork while Andrew counts the colors on the couch. "Two orange cushions" "Three blue cushions..."  The nurse comes in, we follow her into the hallway.  Time for blood pressure, temperature, weight and height(?)  (do they think he grew over night?)  I peek at his weight.  He is still gaining.  I smile.  Must be the two bowls of oatmeal.  Andrew takes his hat off with one hand and checks to see which one it is.  Is it the dragon one?  Yes.  "ROAR!" he yells at the nurse.  "ROAR!!"  Everyone gathers around for his famous "ROAR!!!"   He is happy to oblige.

I follow him like he is a dog on a leash, carrying his tubes and backpack behind him.  Off to the chemo room.  He pees in a cup.  We turn on Franklin, or Scooby Doo, or the Letter Factory, or Snow White, or Dora.  They hook him up to his chemo and a blood pressure cuff.  "Come up here Mommy.  I want to lie on you."  So I climb up on the bed.  I lie at the top of the bed, he sits in front of me and lays his sweet little bald head in my lap.  I rub it.  Can't resist.  And then he tries all sorts of cuddling positions for three hours, taking breaks for bananas, PB&J,  peeing, and changing movies.  I put on my ipod and read  Jon Krakauer's Where Men Win Glory  with his little body next to me. "I love you Mommy." "I love you too, Sweetsie."  "I miss you Mommy" "You miss me?  I'm right here.  I'm always right here."   "Do the dwarfs have tubes Mommy?"  "No baby, they don't."  And I feel some sense of relief that he is so young and so unaware.

Around two hours into it he he gets restless and starts getting a bit crazy.  I remind him that we don't want to put in another needle.  Please sit still!  That seems to work.  But he is still a little manic. 

One more hour and we can go home. 

I sit looking at his sweet toes, and can't believe that this little boy has anything wrong with him.  He is so happy and so full of life and so excited to learn.  He wants me to tell him how to "spell Snow White."

I feel so out of control and anxious.  I sit and pray. And hope.  That all of this pain, and horror, and the chemicals I smell on my baby's breath will be worth it.  I pray that these tubes will eventually, someday, be a distant memory.  One that never comes back to haunt us.

Please Dear Jesus.