So we got word from Boston first, they said that nothing seems to have changed from the T2 view and that from the shunt being placed the areas are all decompressed so nothing seems to have changed - the edema in the ventricles and spine have very much improved. They suggested a scan in 2-3 months with a spectroscopy in the brainstem region, but overall everything looked better GOOD NEWS THEY SAID -  No Cancer!

Then the second call from Jude came in and I was able to get Bostons email to them while in the meeting. They still lean towards caution and want us to scan in the next 2-4 weeks. They too want to do a spectroscopy, and what that is is a test that is to see cellular activity from radiation etc. Possibly a CTPET as well. So two days of sedation. The reason for it is if it is radiation nercrosis they want to start him on a short bout of steriods to stop the damage. They dont feel comfortable without doing their own imaging to just give him steriods. If the tests came back with any hot spots, then they would know where to biopsy him, but that is worse case scenario and we are praying against that!  So an hour ago I was ready to plan summer for 2-3 months and an hour later I am now looking for dates to go to St Jude. Still No Cancer ... this is just the crappy stuff he are dealing with from treatment he needed. We will never locally scan after this, these tests are too sensitive to not just get to Memphis and have it done right so they can compare. 

So - pray that this trip is uneventful and that this MRI and tests come back fine and that we can come home and catch a break from MRIs for a bit. Lord you have this .... I will focus on you! Pray for Nicky and pray that those changes just disappear like the edema everywhere else has been! 

 

 

Support

Ependymoma - Ependyparents

Go to Facebook Ependyparents and Join