06/27/2014
Please continue to pray for Julia.
I spoke with Dr. Modak today about Julia's scan results. I honestly can't think of a worse feeling than having to anxiously wait to see what the fate of your child will be. Do they still have disease? What if it spread or got worse? They look so healthy and energetic but you have no idea what's going on inside that body of theirs. My mind is in a constant battle between good and bad thoughts. I try to stay positive for the most part but it's very hard. Then when it's time to finally see the doc, I analyze every word he says and every facial expression all before he starts discussing the results. My heart drops before he even speaks. Then when he starts talking, I almost can't breathe. It's almost too much for me to handle.
So basically, there is no more active soft tissue disease but unfortunately Julia still has multiple bone lesions that light up on the MIBG scan. Normally the docs would be panicking if they saw this on any other NB kid. But because Julia has had maturing (non aggressive) disease since diagnosis, they're not as concerned. However they do want to do a PET scan to determine if the bone disease is active tumor or not. Her PET scan is scheduled for tomorrow afternoon. If it comes out negative (which would mean it's not active tumor), they feel comfortable moving on to antibody treatment. But if the PET scan is positive, we will have to start a different treatment that is more toxic and will significantly affect her blood counts and bone marrow. I really don't want Julia to have to go through this treatment so I'm praying for her PET scan to be negative. Julia has been in treatment for 8 months and she's not even close to being done.
I need all of you to pray. My friends started the Sacred Heart novena for this intention so please pray it along with us if you would like.
Thank you!
To Jesus through Mary,
Julia's mommy
Almighty God, the Refuge of all that are distressed, grant unto us that, in all trouble of this our mortal life, we may flee to the knowledge of Thy lovingkindness and tender mercy; that so, sheltering ourselves therein, the storms of life may pass over us, and not shake the peace of God that is within us. Whatsoever this life may bring us, grant that it may never take from us the full faith that Thou art our Father. Grant us Thy light, that we may have life, through Jesus Christ our Lord. Amen.
