Tumor that wasn’t a tumor is a…tumor

by Stephanie

Okay, so I have spent the last 29 hours in an adrenaline rush only a mother with a seriously ill child knows.  If you know this…I am SO sorry.  But you know, and you never forget.

So Avery woke up Thursday morning and was (I thought) being a typical weird eight year old.  She said she was seeing two of some things and kept crossing her eyes.  Whatever.  But then she kept saying and started walking around the house like she was blind.  Okay, I started to get nervous.  Then I called her Pediatrician, who wasn’t in.  But the nurse suggested going directly to the ER.  Now I was TOTALLY panicked.   I emailed her Neurologist who now lives in Portland, OR.  He IMMEDIATLY sent his phone number.  You know things are scary when they send a phone number for you to call…right now.  I did, he said take her to the Children’s ER in Seattle.  He was going to call in so they knew she was coming.  So at 11:30am I jumped in the car with Avery and made the 90 minute drive.  NOT stopping for food.  NOT taking anything for overnight.  TIP:  If you are headed to a ER, get food on the way and take a change of clothes…just in case.

She was admitted, at 1:30am!  So at 1:40am, I left my darling in the nurses care, drove home, slept till 5am, got clothes, makeup and another book (since I read the one I had the first day in the ER) and headed back to Seattle.  I needed to be there by 7am when the Dr’s had their first rotation.  I made it.  And then had a 30 minute nap. 

She saw Ophthalmology, Neurology, Neuro-Surgery and Neuro Oncology.  Then they all had to get together to decide what do to. 

Currently she has about 5% site in her left eye and about 50% in her right.  They have a Brain Tumor Board that meets on Wednesdays.  She is on the list for this weeks meeting.  Basically it is a bunch of doctors that look at all the information and decide what is the best course of action.  So we have an appointment for Wednesday afternoon.  She most likely will have chemo ad/or radiation.  But we really don’t know yet. 

We will keep you updated.  I am going to sleep for at least 8 hours…


  1. I am so sorry this is happening to Avery and your family. we will definitely be sending thoughts and prayers your way. good luck!

  2. How scary. Praying for your Avery, and you that your adrenaline keeps up as needed!

  3. We will keep you in our prayers.

  4. A parent's worst nightmare. Know how very much you are loved. You are in our hearts and prayers. Love you!

  5. Steph...your sweet girl and your family are in my thoughts and prayers. Wish I was closer and could help out some way. Please call me if you need anything! Sending lots of love your way! 301-471-6052

  6. Steph, I don't know where I've been but found out about Avery yesterday and my heart ached for you and Chris. Please know that you are in Jefferson and I's prayers.

  7. Oh my goodness, Stephanie... I can't imagine what you all are going through right now. If we were closer, I wish that we could help out in some way. If there's anything we can do from a distance, let us know. Avery will be in our prayers, and the next time we're at the temple, I'll put her name in.