Thursday, August 8, 2013

Dear Team Jacob G,

I was going to share my notes from recent weeks, but ultimately they don't really matter.  The back-and-forth with doctors, waiting for them to receive and review Jacob's scans, is irrelevant today.  
I finally spoke with Dr. Pincus, Jacob's neurosurgeon at Shands UF, and he informed me that after reviewing Jacob's most recent scan from NIH in June, he and Dr. Friedman agree that Jacob is no longer a candidate for radio surgery.  The tumor has "changed" too much since January.  We were aware that it had grown 2mm in each direction since January, but never thought a few millimeters would make or break this decision.  We had faith that one of the three drugs being used to treat NF2 tumors would help stunt the growth of Jacob's vestibular schwannomas, but in the end, Jacob needs brain surgery.  A 12 hour, life changing, terrifying brain surgery.  Jacob will have to decide where he wants to have the surgery.  He has to decide when to have surgery. Choosing to have surgery sooner rather than later will give him a higher chance of facial nerve preservation.  He could also wait it out until the tumor is compressing the brain stem more and is life threatening, but that is risky, too.  Then there's the question of when to place an ABI. 
It seems like there aren't any good options with NF2 and we always sacrifice one important part of life for another.  Jacob turns 17 in a few days.  I wish with all my heart that he could just be a carefree 17 year-old for just a little while.  I wish he knew how that felt.  It's disturbing to see kids who take their gifted lives for granted when there are so many sick children who would cherish just one "normal" day.  Jacob was recovering from major spinal surgery on his 16th birthday, without the excitement of being able to get his driver's license.  NF2 has taken that from him and robbed him of so much of his 16th year, enduring three spinal surgeries over the last 12 months.  It just isn't fair, but life isn't fair, is it?  That's what I keep hearing.  We were really hoping Jacob's 17th year would be filled with less medical challenges and more happy adventures.
Jacob will be given the bad new this afternoon when he returns from camp.  My heart is breaking. 
Monday, we will head down to St. Pete to visit family, get in a beach day and hopefully enjoy another day at Busch Gardens.  Thursday, Jacob has an appointment with his neuro-oncologist in Orlando.  I hope they can determine if the current chemo is affecting any of his other spine or brain tumors.  Our beloved nurse practitioner, Hillary, is leaving and her last day will be tomorrow, so we won't get to tell her goodbye. After Orlando we head to Gainesville to see Jacob's neuro-opthamologist at Shands, Dr. Samy.  We will get to tell Dr. Samy goodbye.  He will be leaving at the end of August.  
Please pray for the decisions we continue to have to make. Pray for strength to face the days ahead and pray that God covers us with His love in this lengthy storm.  Pray for Jacob.

1 comment:

  1. I am praying for you all & especially for Jacob as you face this together. I am so sorry. I sit here crying tears over the fact that NF2 robs us of so much. I wish there was something more I could do.