The beast

September 14, 2016 changed our lives more than we could have ever imagined.  We had checked into Children’s Hospital to do a routine MRI (our first at Children’s) and another EMU Study.  We were fortunate that they were able to hook up Reagan’s electrodes while she was still under from the MRI, which cut down on a lot of stress for her.  

After the MRI is done, and she is waking up, Blake and I go back to the recovery area to see her.  She’s super cute and groggy from the anesthesia.  Once they say she is ready and stable, we take her up to the in patient floor.

We had left all of our overnight bags in the car so that we wouldn’t have to carry them around during the MRI.  Reagan and I got comfortable on the bed and cuddled while we watched whatever was on TV.  Blake went downstairs for the bags.  While he was out, the Epileptologist comes in.  She has some news about the MRI.  Reagan has a brain tumor.

An electric shock went through my entire body, down to my toes, through my arms to my fingers.  My body was numb.  My brain gone.  She told me she wanted to tell us before the Neuro-oncologists came to the room to discuss it with us.  “My husband is getting our bags.  I won’t remember any of this.  Can you come back when he gets back?”  I repeated and asked her every time she tried to tell me anything about it.  “Can you come back and tell him?  I won’t remember.”  I wasn’t there.  That wasn’t my my daughter she was talking about.

Our Nurse comes in and the Epileptologist leaves with promises to come back.  The Nurse is asking all of the normal check in questions.  Blake returns to the room with the bags.  I can’t look at him.  I want to tell him but I don’t want him to see it in my face before I can tell him.  

It seems like eternity before the Nurse is done and the three of us are alone.  All I can think about is our perfect family, now shaken to it’s core.

I get up from Reagan’s bed and sit on the couch with Blake.  I make sure Reagan isn’t looking at us; we promised each other that she would never see us cry about her medical conditions when we first started down the Epilepsy path nine months ago.  

As soon as I look into Blake’s eyes he knows something is wrong.  “The Doctor came in.  She has a brain tumor.”  My eyes overflow and I can’t hold it back, I can’t get my words out.  “I don’t know.  I don’t know, you have to find the Doctor.  I asked her to come back.  I can’t remember where the tumor is.  I don’t know.  Find the Doctor.”  I am just sobbing, shaking.  Blake is in shock.

As Blake walks down the hall to find the Epileptologist, she walks back in.  I am still sobbing, I tell her Blake went looking for her.  She goes out into the hall and somehow finds him and brings him back in.  I don’t know.  I can’t make sense of any of it.

She explains to us that it is a tumor on the back of her brain stem, specifically her medulla.  The Neuro-oncologists will come in to discuss it with us.  It’s small.  

Reagan completely exhausted from the MRI and the EMU.