Monday, May 23, 2016

MRI Results

Everything looked fine on Emmett's 4/28 MRI!  This MRI only included the spine and brachial plexus as those weren't included on Emmett's 3/3 scan.  They did note one spot at the C6 level that might be questionable, but looking at previous scans they can see the same thing all the way back to 2014, and it's unchanged today, so they're not overly concerned about it.  (We think this might be the same spot near Emmett's primary tumor that the Boston calls a "tethered spine" and has been watching closely?)  Emmett's next scan is 6/2, and that scan will include the brain, brachial plexus, and spine.

Because there weren't any tumors identified in the scan (yay!), Emmett is still not a candidate for the EZH2 study.  This is the study we've been hoping for because it has no significant side effects.  This means that any treatment we consider at this time will likely have a negative impact on Emmett's quality of life, and that's never fun.  If Emmett were experiencing symptoms from a tumor currently, it would make the decision to put him through harsh treatment easier to make.  But as it is, it seems the doctors are really reluctant to make him sick when he's so healthy otherwise.

The one thing that's become clear to us is that there's no clear, best path forward in the doctors' minds.  In some ways that's a good thing; it means Emmett is doing well and things look good enough that it's hard to justify making him sick.  At the same time, we do wish that the best treatment plan to help ensure Emmett's long term survival was more obvious.