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.
Sincerely,
Tammy
