Jan 28, 2016

CJ's exam results

CJ's first follow-up exam under anesthesia was today.

The treatment for the previous tumors was a success; there's no recurrence in the spots that were treated.

However, additional tumors were found- one new tumor near the optic nerve in his right eye, and a few small tumors in the outer margins of his left eye.  They were all small enough to be treated with laser therapy (not specific which type, but it sounds like it was less intensive).

We're also staying overnight again, due to the anesthesia; he was right at the cusp of choice whether to stay or go home, but the anesthesiologist recommended h estay.

He'll have another exam/follow-up in three weeks.

More general info / what we know so far:

  • We're not out of the woods.  While we likely won't see more tumors appear at every exam (three weeks apart at the moment), there's a far greater chance of more appearing yet, for several years to come.  The biggest threat is the first few years, but since it's known to be bilateral, will continue to be possible until approximately age 10.
  • The possibility of a trip to New York is similarly not out of the realm of possibility.  This route is all based on how the tumors grow and/or if the treatments become ineffective.
  • We have a few years to wait to start figuring out vision loss (age 3 or 4).  Tumors near the optic nerve are more likely to cause vision loss, but they can appear anywhere on the retina.  The first tumor will definitely cause problems with vision, but complete loss of vision or the eye is unlikely.
  • Exams will continue to be every three weeks until at least age 2, and slow slightly to every 4 to 6 weeks until age 7.  Later exams won't need to be under anesthesia.  MRIs will also be regular, though not with every visit (sounds like six months or so at the moment).

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