Roller Coaster

By Stephanie

  No I do not mean the kind that we rode in Florida.  I am taking about the last three days.  Just when I think we are “stable” something happens to show me we are NOT. 

Monday Avery had an MRI and OCT(this is what measures the optic nerve) scheduled.  As we were getting her IV out after her MRI, I got a call from the hospital number.  It was the nurse pract., Cori,  from oncology. 

“Where are you?”


“Good.  Don’t leave.”

“I wasn’t planning on it.  We were just going to get Avery a snack before we headed to optho.”

“Don’t let her eat.”

Then there was some blah blah blah…surgery.  That’s what I heard.  Only the last word…surgery. 

   Apparently, her front ventricles, little butterfly looking pockets in the front of your brain that hold fluid, but also have the fluid flow through, looked enlarged.  And they were concerned.  So we went to optho.  Everything looks stable (YAY).  But her vision is a bit worse (seriously…I know). 

  We went and they had the nurse pract. from Neuro-surgery come and get us.  Then we waited (while Avery was STARVING..just ask her) for about 40 minutes until the dr.s decided we could go home.  They said watch her.  I asked what to watch for specifically: headaches, nausea and tired. 

Ummm.  She is a CEMO patient.  She is ALWAYS tired, nauseous and has headaches. 

They added her back to tumor board today (again… LOVE them).  They decided to do a spinal tap. This will tell us if the pressure is high enough to put in a shunt.  If so, they will do that immediately while she is still under.  If not, we will go back up on the steroids and go down VERY slowly this time. 

If they put in a shunt she will have to stay the night.  They will watch her for infection and it IS in the brain! 

We will let you know…….

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