Tuesday, January 20, 2015

The Unstable World of Stable

I am finding that living in the world of "STABLE" is hard.  ALMOST as hard as living in the world, where we saw the doctor every week, to monitor 3 brain tumors.

Let me explain.

When Bailey's tumors were discovered...It sent us into another world.  A world filled with weekly doctor visits, MRI scans, blood draws, fevers, nausea....Writing about it, being 2 yrs removed from that life, is surreal.

It's a blur...I don't remember how we managed.

We were given so much attention...And we felt "safe".   At least I DID.  We knew that if anything were to go wrong...That our doctors were RIGHT THERE....And that they knew us.  They knew our story.

Being "stable" scares me.  Because I know any moment, that could change.  Any moment, life can send us right back to that other world.  A world that we have become strangers to.

At our last MRI...The news of "STABLE" sent a very uncomfortable feeling -- "See you in a year!"  I should be celebrating this news...Right?  I did celebrate...But....

This news made me feel like these doctors have no idea how suddenly and abruptly life can change....You would think - that working with children with cancer, they would understand this!

They sent us away...Like ending a relationship...A breaking of hearts.

Don't they get it...?

Stable means NOTHING to me.

A year from now, we will be strangers to our doctors.  Our story forgotten.

I feel like the tumors in my daughters head, are just a ticking bomb.  I mean, they came from out of no where...We were blindsided, when they showed up on the MRI ...Why wouldn't our doctors want to monitor them more closely ...?  A year is a long time.

I keep reminding myself that STABLE is a good thing.  But we were stable before those tumors were found...Then got the wind knocked out of us.

I can't relax.  The moment I get comfortable with STABLE....Everything changes.



  1. I feel the same way Kristi, there is a strange comfort being in the doctors office so frequently... it does feel safe. When I got told I only needed MRI's every 2 years now to monitor the tumor in my brain, I felt panicked. Now the week leading up to my scan gets me so stressed, because SO MUCH can change in such a short period of time!

  2. Thank you for sharing. My 2 year old daughter is 3 months away from completing her chemotherapy protocol and I'm terrified. The thought of not seeing the doctors every week, them checking on her to make sure she is okay scares the crap out of me. The safety of not monitoring the tumors on a monthly basis literally terrifies me. Learning to celebrate stability right along side of you!