Letters To John Paul

Dear John Paul,  

Yesterday, you turned 14 months old and exactly one week from today marks one year from the first time we brought you home.  The first time home only lasted 12 hours before you had to go back...but it was the beginning of a new chapter in our journey with you...enjoying having our whole family together.

I feel like we are starting on another chapter of your sweet life now.  It has become increasingly evident that, against all odds, you are struggling with something more than SMA.  A few weeks ago, you had a second MRI of your brain to monitor the increase of fluid in the ventricles of your brain.  The doctors did see a slight increase compared to your previous MRI that showed a significant amount of fluid, but are referring us to a neurosurgeon for a full interpretation and to assess if they would recommend doing anything to treat it.   Needless to say, I am very interested to hear how they feel it is impacting you and what they would expect to see in the future.  For that matter, I would love for someone to come up with a reason it is happening.

On an unrelated issue,  the doctors have tested and retested your urine and have found both times, that you have elevated levels of something called homovanillic acid.   This is one of the indicators, along with a few other symptoms that is causing concern that you could have something called a neuroblastoma.  It is a type of cancer that attaches to nerve tissue.   I won't lie.  When I got off the phone with the doctor who told me this I started searching the house for hidden cameras.....seriously?????  Is this some sort of sick joke????  I feel pretty silly even writing it as a possibility.   I hope I am being silly.  We will meet with the neurosurgeon one week from today and they are trying schedule the scan for the neuroblastoma for the same day.

I am trying very hard to just deal with known facts and not hypothetical situations right now.  Its not easy.  I feel the need to remind myself a lot that all of this medical mumbo jumbo is so complicated but your life is much more simple.

I love you John Paul.   I can't wait to snuggle soon.

Love,
Mom