Thursday, February 25, 2010

Diagnosiversary

One year.  One year ago, today, Gregory was diagnosed with Leukemia. 
Carrying him in my arms, we made the long walk, down the longest hallway I've ever walked, from our room in peds intermediate, to the procedure room, near the PICU.  We placed his weak and sick little body on the gurney and stood back and watched.  Watched as a team of staff hooked him up to plethora of strange things.  We stood silently as the anesthesiologist began his sedation.  Once sedated, we stood silently and watched, as they flipped his little body over.  Pointing his hip to the ceiling.  Baring his backside for all to see.  Prepping the area with antiseptic.  We stood there silently, I clutched Gregory's blanket, watching in horror.  The curtains were drawn and we were saved from watching the actual Bone Marrow Aspirate.  I remember reaching out for Larry's hand.  I remember silent tears gathering in the corners of my eyes.  Shocked that THIS is where we were.  Terrified.
The staff had told us that if the marrow showed no signs of leukemia, we would remain in peds intermediate, until we figured out what was wrong with Gregory.  If his marrow did prove to be Leukemic, we would be immediately moved over to Pediatric Hematology/Oncology.  I find this hard to believe, but I must have had some kind of gut feeling.  Before the procedure, I had packed and organized our limited possessions.  In case of a move.
This was Wednesday morning and I had been with Gregory, ever since we were admitted Monday.  Somehow I had gotten my hands on my laptop, not quite sure who had brought it down.  Even at this stage, I had my knitting, my music and my internet. 
The Bone Marrow Aspirate didn't take more than ten minutes to complete.  A flurry of activity and we were left alone with a nurse, who was monitoring him.  There were four of us.  Myself, Larry, my Mom and Gregory.  We stood around him, like a vigil.  The results were rushed through.  We waited, anxiously.  Gregory had been sedated, we were anxious for him to come out of it.  We were anxious for the results.  We had about two hours of nervous and stilted conversation.  Constantly watching the monitors, as Gregory slept off the sedation.  He slept the entire time.  This is when we discovered that the sound of Daddy's voice caused his heart rate to rise.  I wanted nothing more, than to climb upon that gurney and snuggle him out of it.  They wanted his airway free, so I had to stand at his side and hold his hand, grip his leg, rub his back, stroke his hair.  Gaze at this precious face. 
Towards the end of our waiting, Larry needed quarters to feed the meter.  He prefers to park on the street.  He was out of change and I knew I had plenty in my wallet.  I took off, again, down that long hallway towards our room.  As I approached the room, I noticed movement inside.  A cart parked halfway in, halfway out of the room.  I came to a screeching halt at the doorway and froze.   Unable to catch my breath.  Lights, blinking in my peripheral vision.  My heart pounding so hard in my ears, I was sure you could have heard it had you been standing near me.  The bed was elevated and stripped to it's rubber covered mattress.  There was a staff member scrubbing the room.  Our belongings, that I had neatly placed at the end of the couch?  They were gone.  Not an item in sight.  At that moment
I knew. 
I raced, again, down that long hallway.  I looked at Mom.  "Our stuff is gone."
She knew.
I explained to Larry what it meant. 
Not long after, Dr Reynolds and his coordinator Jennifer entered the room, the doors were shut.  Never a good sign.  I hate it when people close the door after themselves.  It's enough, the feeling of being trapped. let alone the premonition of really bad news.  Jennifer stood quietly to the side and gave witness.  I can't recall Dr Reynolds' exact words, something close is:  "We've got a long road." 
Suffocating, hiccuping, stiffling, chest searing sobs.  Trying to breath and keep your cool.  Wanting to unleash this beast that is now lodged, permanently in your solar plexus.  Compressing your lungs. 
The knee jerk questions.  Chemo?  Yes.  Hairloss?  Yes  When?  Immediately 
Except:  Not. Immediately.
This was not "regular' leukemia.  This was not the leukemia that I had Dr Googled and discovered high rates of cure.  This was not the leukemia that is diagnosed simply with a Bone Marrow Aspirate.
Gregory was stirring and waking up, more and more.  He was stable enough to move.  I gathered his little self and we proceeded, as if in a processional, through the maze that lead to Pediatric Hematology/Oncology.  Numb, in shock, exhausted.  We were escorted to purple room 308, right in front of the nurses station. 
All of our belongings were there.  The bed was turned down and covered with a new, soft fleece blanket.  Our first "gift" from the world of Childhood Cancer.  Next to the bed is a huge, wing backed recliner.  I clung to Gregory and sat down in it.  Not wanting to release him.
Christina. 
Christina is a Peds Hem/Onc nurse.  She had been floated off the Peds Hem/Onc unit on Tuesday, over to peds intermediate.  Christina was our nurse on Tuesday.  We clicked.
Christina was our nurse as we entered the world of Childhood Cancer.  She followed us from "the other" world to "that one".  She was gentle, informative.  Patient.  Frank.  Perfect.
"Gregory's not sick.  He just has Cancer."
P1000440

The Only Picture From That Day
February 25, 2009




1 comment:

Anonymous said...

Thank you so much for sharing your story with us. You're strength is inspiring!