ok so I got an update yesterday via my mom. the doctors/team in Boston did not discuss my case at the weekly Chordoma conference on the 14th as we were told they would. it seems I was not put on the list by a certain person (and this was not the first time this person has "forgotten" to put someone on the list for discussion). this person has since been let go. *what a shame* I was however discussed at the weekly conference on the 21st and since I had gotten so sick with pneumonia the team all decided they needed to see my CT scan that was taken while I was in the hospital.
As a reminder my CT scan showed lots of nodules in my lungs so the Chordoma team is interested to see what's going on because Chordoma can spread to the lungs first. My mom sent the disc out on Friday so hopefully they will have it by their next conference this coming Thursday.
that's all the updates I have for now, I see my pulmunologist tomorrow so I will have some more updates about my lungs then, hopefully the pneumonia is starting to clear!
xoxo
kayla
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