Cancer · Childhood Cancer · children · Histiocytosis · liver disease · Parenting · pediatric cancer · PTSD · Uncategorized

Feeling Squishy

3:30 a.m. Tuesday morning.

I have Sophie tucked into her booster seat behind me.  Butterfly pillow between her head and her brother’s car seat as she leans into it.   Sugar-skull covered fluffy blanket over her.  She’s still in her Lego movie pajamas and falls right back to sleep once I get the truck moving.

I drive back roads the 3 hours to get to the hospital for a 7 a.m. procedure.

The sky looks like flat black construction paper with pin holes poked in all over it, back lit.  And the moon is a tiny sliver lying nearly on it’s back as if it was a cup holding fluid that was pouring out.   It’s a burnt orange yellow color and it winks at me through the black skeleton silhouettes of acres and acres of pine trees as I drive.

NPR has BBC World News on and I watch for Orion in the sky.  The North Star.   The Big Dipper.   Scorpio.   Hercules.

Orion leads the way, making me feel secure.   I’ve always associated Orion with safety.  Home.  Peace.  Ever since my Grandfather taught me the constellations from his veranda in Honolulu when I was a kid.

It’s endoscopy day.

I expanded my vocabulary significantly when Sophie was diagnosed.  “Port”  “NG tube” “ANC” “leukocytes” “Alkaline phosphotase”  This expansion includes a few words invented, it seems, by the chemo community.   One of those words was “Scanxiety.”  It’s the anxiety you get when your child is scheduled for or has their annual or biannual or biennial or whatever the schedule is scans to make sure the cancer isn’t back.  And it’s serious anxiety, waiting for the doctor to either clear your child or not.

A similar anxiety is the anxiety that comes with any related procedures.  My daughter has endoscopies on an annual basis.   Just to make sure the liver isn’t worsening and putting her at risk for another GI bleed.

But with her platelets dropping recently, the risk of varices coming back was actually pretty high.  So high they actually moved her endoscopy up 5 months.  They did her endoscopy yesterday morning.   She’s had a few scans recently (ultrasounds and bone scans).  And I’ve been this wreck of a woman.   The people at work are keeping their distance.   It’s embarrassing, but I’m real and I’ve always been real, so I guess that’s irritating to people.

The anxiety is crushing.   Painful.   Hides tears just behind your eyes so one stray thought or word and you look like a woman on the edge.   During the scan or procedure and the wait afterwards, you hit a rush.  Adrenaline takes over.  You are moving on pure energy and just pushing to keep moving forward until word comes.

“The Scans are clean.”  “There are no varices.”  These are the golden words you pray for, but your brain does bad things.   You know that if they don’t find any varices, they are literally in and out in 5 minutes.  Just put the scope in and BAM, they see nothing so they are done.

Your brain does bad things, though.  During the wait… you sit in front of the computer screen they have on the wall showing which surgeries and procedures are in the OR, are at the end of the procedure and preparing to move to recover, and which ones are in recovery.  The patients are identified by number, so it’s totally anonymous, but you have that number memorized in less than a second and you stare at the number and the color code to make sure you’re right.  She’s in the OR still.  Why has it been 15 and she’s still in the OR?  If they found nothing, they’d be onto the “closing procedure” stage on the update board.   So what did they find?  What’s there?  How bad?  Your anxiety is a bad bad thing and it takes over and you find you can’t drink and your stomach is doing flips.

Then they have the doctorate fellow that works with your child’s doctor call you on your cell phone.   Heart.Stop.   It doesn’t help that she barely speaks English and you are in a crowded and somewhat noisy waiting room.  I’m hand over other ear, trying to understand…  I THINK she says they only found little vessels and scar tissue…  I can barely hear her.  But I manage to ask “So no Varices?”  And she CLEARLY said “Yes.”

A wash of relief.

Adrenaline CRASH.

I could have curled up and slept right there.  But I had to wait until I got home and got all the babies down for the night.   (WHY do we have so many stinkin’ kids???  Is it still legal to sell them to the gypsies like my mom used to threaten?)

They moved her to recovery and then called me.   She looks horrible when coming out of anesthesia.   So weak and small.  I get that she’s 8 years old and is small and is my baby girl, but she’s just this force of nature 99% of the time.  She walks in and takes up all the air in the room.   She’s just so MUCH of the much!   And I walk down to find her hair mussed, an oxygen mask in front of her to keep her 02 sats up while she’s waking up, all hooked up to those sticky monitor things that make her skin pink, an IV pumping fluids into her.   So tiny.

But she’s clear of GI bleed risk, so I feel like I can breathe.  I call everyone in the family.   And during my call to her daddy she starts to wake up and is startled.   Anesthesia sucks for little kids.   It takes a second to calm her and she’s asleep again.   Minutes later, she startles again, but stays awake this time.   And I tell her.  And she smiles at me and says “so no liver transplant” and I have to not cry and smile back and say “no liver transplant in the foreseeable future.”   And THERE’S MY GIRL!!!   Bright smile and so beautiful.

So good news yesterday.  This is a long rambling post.   I’m feeling philosophical and emotional and relieved and squishy happy.   I drove home 3 hours yesterday after the adrenaline crash and had a rough night with two fussy little ones and Sophie spiked a fever from coming down off of the anesthesia.  But this morning all is right with the world.

Image courtesy of domdeen at

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