Thursday, January 9, 2014

Hello, world.  It's been 10 weeks since Jacob's brain tumor resection and I'm happy to say that things have been quiet in our medical world.  A much welcomed peace.  I wish so badly that it could last Jacob's lifetime, but we know that won't be the case. Jacob returned to school and is back to most of his normal routine and activities.  He's adjusting the best he can.  He gets easily confused and frustrated with multiple sources of noise and voices.  He has lost his sense of place in his surroundings, but it is what it is and he's doing amazingly well with what he's been given.  Jacob has very little facial weakness and regained most of the feeling that he lost during surgery.  He claims the odd tastes are going away as well.  He continues to heal.

As Jacob sits at his desk trying to catch up on missed school work, I sit at mine trying to straighten out all the things to come.  With Jacob coming home with tales of almost falling or full-on wrecking himself daily, it's time for him to return to physical therapy.  Jacob's right side blindness and missing right balance and hearing nerves combined with the multiple spinal surgeries, poor balance is expected, but hopefully with hard work it will improve.  Jacob's six month full brain and spine MRIs are scheduled for the last week in January, followed by a clinic appointment with our pediatric neuro-oncologist at Arnold Palmer in Orlando the second week in February.  In this appointment, we will review the MRI findings and discuss any more chemotherapy options to control the growth of the myriad of other tumors Jacob has.  Jacob is particularly worried about his left vestibular schwannoma (VS).  It’s around 2 cm and it’s very common in NF2 to see rapid growth after one of the VS’s is removed (which is the surgery Jacob had in October).  Jacob's left side is now his only functioning hearing and we know that the left facial nerve has it's own tumor as well.  Radiation is an option, but with a 50/50 chance of hearing loss after radiation, we hope that a drug therapy will finally grant some reprieve.  Jacob has also asked for a new prosthetic eye, so we’ll be heading to Gainesville soon to start that process.

As always, please continue to pray for Jacob and for guidance and hope in the next chapter of his journey.

Oh, and most importantly, I hope all of you are doing well and each of you had a very Merry Christmas and Happy New Years!  It was a thankful and humbling season for our family for sure. I'm still in awe of the love and support we received during this last storm.  I will be forever grateful. Thank you all.



No comments:

Post a Comment