Monday, March 19, 2012

Third Times a Charm?

The UPS guy came today.  He left a package on our door that had a big RED stamp across it that read URGENT!  I knew what it was...We have been expecting this delivery for over a week.  Generally, I am excited when we get a package from UPS...But THIS was Bailey new chemotherapy.  Excitement, simply wasn't there.

This is our 3rd (and hopefully final) chemo...

The first chemo (Carboplatin) did nothing...Bailey's brain tumor grew through treatment...The second (Vinblastine) has kept the tumor stable...But put Bailey's body through WAY too NOW we are ready for the KNOCK OUT PUNCH!

But I feel different about this chemo....When you are in the hospital--getting blood draws every week....Everything so sterile and precise....It leaves me extremely weary, of having Bailey swallow this pill every night, with no one monitoring anything (except the once a month visits for a CBC)

I can't help but wonder if THIS chemo will be it.  Will my 16 yr old battle this forever? I know Neurofibromatosis is a LIFE LONG battle...But Bailey has been in a fight, that goes beyond what MOST people with NF have to deal with.

At 16 yrs old, she has had more MRI's, needles, surgeries, fevers, hair loss, hearing loss, days lost from school, nausea, dizziness (the list goes on)  than ANY teenager should have to face.  At 16 yrs old, she has had to face the monster of uncertainty....

I should be able to provide a comfort-zone for my child...But it's honestly something I can't offer Bailey...and she knows it.  I can tell her everyday, that "Everything is going to be okay"....(And it very well may be okay in the end)  But I can't promise her...And that hurts me so much.

My job, is to teach Bailey to put all of her fears and uncertainty into God's hands.  Doing this has brought with it, its own comfort.  We know as a family, that we are too small to handle any of this...and ONLY GOD has the control.

A 'THRIVING LIFE' means to let go of all the things we have no control over...and to rein in and focus on the light, that letting go brings in.

I am a work in progress.  I want to "fix" Bailey.  But what I have realized over the past year -- is that sometimes it's the most "broken" people, who are the most positive, God-loving people you will ever meet.

I am broken.  And I am trusting God....and letting go.

Thrive On!


  1. Oh Kristi, My heart goes out to you as a mom. I agree with you 100% that the broken people are better off. I know I am. Praise God for his grace to put us back together. AND praise God that we are broken so that we see that we NEED to be put back together!

    I really, really hope this is it for Bailey. How is she handling the new chemo?

    1. (((HUGS TEREASA))) Bailey is doing okay...But this dizziness she is having is CRAZY! She has a peer helper walking her to and from classes in school, and most days, just wants to lay about...because of the dizziness.
      We know this symptom is from her acoustic nerve tumor, and not a result of the chemo... :(
      I guess we are just prolonging the inevitable (surgery)
      Thank you for your care and concern :)