Friday, December 17, 2010

MRI Results-Neurofibromatosis

"His results are a complicated mess," the MRI technician says to me, "We need him to come back in for more images."  I hung up the phone not sure what to think.  "Complicated mess?"  What does this mean?  What do we do from here? What, by the grace of God, am I supposed to think?
My answers wouldn't come until late today.  Despite the fact that his past MRI's showed nothing beyond some bright spots on his brain and small tumors at the base of his brain, despite the fact the optic gliomas are not supposed to grow past age 8 -- there it was - an optic glioma on his left side.

 In addition, multiple plexiform tumors are covering the bottom part of his spine (L-5 to S-5) as well as one under his left armpit. Long-term effects, if the plexis continue to grow could be devastating to his ability to walk, and even develop into scoliosis.
Another finding was that the tube connecting his kidneys to his bladder, called the ureters are doubles instead of single.  While not extremely uncommon, this disorder could cause several different issues down the road.
I stood outside, shivering in the cold wind of winter stunned. The doctor brought up a word we've been lucky to dodge to this point in our lives - Chemotherapy. Was I hearing the diagnoses of some other child?  Why just a year before weren't these issues picked up?  The world was spinning as I tried to absorb what our doctor was telling me. 


Referrals were all ordered for the countless appointments that lay before us. I hung up, and just stood there, too stunned to move. 

I had been babysitting kids this afternoon, and their mom was still there, listening to my end of the call. Ironically, I was babysitting so her husband could go to his own MRI. Rich showed up just minutes afterwards - it was all I could do not to break down the minute I saw him. I just told him results weren't good, and he quickly ushered out guest out of the house, and we headed downstairs to try to figure it all out. 

I haven't completely broken down yet. I've come close, but I don't think I've quite accepted it. Crying is ok, after all. Crying and grieving for broken dreams is part of Thriving. Because out of crying comes new dreams, and new hopes for Braden. He's my bright-eyed boy, and as the puzzle pieces of his battle with NF come together, he's going to put together the picture of his life through his own Thriving Spirit. And together - as a family - beyond the tears - we will all Thrive On. 


  1. Let your self brake down sweetie. u don't need to hold strong.. its okay to let go... im crying for you guys myself...
    **hugs to hold you tight***

    Even tho i cant be there in person.. you know where i always am. and know there isnt anything i wouldent do to help you ...

    Praying for you all...

    <3 u sis.

  2. Sharing your struggles and joys with others is an awesome way to work out your journey. I sure wish I had something like this of Facebook when I was going through non-stop Hell with my son from age 5-18. I had no one who really got it or understood it and that too can be very lonely for a mom who lives with the affects of NF through a child. I did journal all the time though & stayed in the word and got prayer when needed. Good job girl......keep it up...others our there who are being encouraged by your fight to Thrive!

  3. We did 6 weeks of radiation when Aaron was 5 & chemo when he was 14 on his eyes so I know first hand the overwhelming emotions you are wrestling with now. Many various surgeries too....hang in there momma!