The care conference went okay today. We had both our SuperDoc and SuperNurse there and it was wonderful to have their support and knowledge. It was good hear that everyone is on the same page and hopeful that radiation could still work.
Jameson's biggest issue
is that his immune system and bone marrow are both compromised, but not
from the radiation as I originally thought. It is from the
lymphangiomatosis. He is leaking too many essential things into the
chyle and then it leaves the body from the chest and belly tubes. As a
result, the rebound we have been waiting for before radiating his chest
won't happen. Instead, until his disease in stopped/slowed he will
continue to become more and more immune compromised, which is already a
tough thing as he is almost bottomed out. Infection may be one of our
biggest fears and problems; if he were to get a bad one, it would be
extremely difficult for him to recover. The plan is to start radiation
of the lungs and chest cavity after Thanksgiving. Waiting longer only
lessens survival chances.
We are also starting back up on the
rapamiacin (sirolimus). I am at home with Little Man but it may have
already been started back up today. This drug is immunosuppressive, so
there is risk but we have to try everything to stop this disease. He
has been taking the inferon as well over the past few weeks.
are no other options left on the table. If sirolimus and/or radiation
do not work as we hope they do, we will put a plan in place to keep him
as comfortable and happy as possible and enjoy every precious second God
gives us with him.
Please pray that Jameson stays well and
infection-free. At this point, infection may even be a more dangerous
enemy than lymphangiomatosis. And please continue to pray that
radiation works and heals our sweet Jameson. God bless and thank you
all for your prayers and love.
Addition: I just got off the phone
with Hubs and J's belly tube has stopped working and was pulled out.
He will most likely be getting another one put in tonight or tomorrow
morning. Poor J.