Leigh, Kym, William, Jorryn, and Macyn … and our adventures!

Last Week

Sorry for not updating sooner, but things have been crazy! 🙂 (Including our super-cute and cuddly littlest baby girl killing my laptop!)


Last week, we were scheduled to be at NIH for testing Wednesday and Thursday. At some point, I think sometime on Wednesday, they added a surgical clinic to the schedule for Friday. The first two days were uneventful; it feels like we’re getting to be old pros at this! We have learned the ins and outs of getting on and off campus, and we’ve got the clinical building down!


Friday, we met with the endocrine surgeon. His fellow, Dr. Pacek, Lyza and Bill (two of the fellows we’ve gotten to know throughout this experience) were there as well. They are all confident that everything from the neck down will be easily removed by surgery. (They did not address the one/two in his ear, this/these will be addressed by the ENT we saw in clinic the week before.) They *think* there may be another tumor in his right kidney/gallbladder area; they will be looking at this closer in this week’s tests to determine if it is in fact a real tumor, or was just an area of higher metabolic activity as shown on the latest nuclear study. That one (if it is another tumor) and the one in his chest may be able to be removed laparoscopically and orthroscopically, respectively (I think it’s orthroscopic surgery; when I Googled what we heard, I got this and arthroscopic surgery, and this seems to fit better!). The two in his neck, depending on how he tolerates the first (right side) one being removed, may be able to be taken care of in the same hospital visit, with the surgeries being two to three days apart.


We are back at NIH today and tomorrow; he’s having another nuclear study over the two-day span, and they’ve added an ultrasound of his liver. After this week’s tests are complete, Dr. Pacek, the endocrinologist, thoracic surgeon, and the ENT surgeon will all meet and discuss the best plan of care in Leigh’s “rare” case.


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