Our Smiley Seth

Our Smiley Seth

Thursday, December 29, 2016

Non-Diagnostic

It has been one week and two days since Seth’s brain biopsy and we have been waiting patiently to hear the results.  Today I decided to call and check in since another long weekend is fast approaching.  I called earlier in the morning and asked that one of the doctors call me back.
Around 2:30pm Dr. Wright called and informed me that the biopsy came back non-diagnostic and therefore they could not make a diagnosis.  The cells they had taken were normal cells found in the ventricular system of any persons brain.  I asked what that meant and she explained that they could not confirm the tumor is ATRT or another type of rumor and that the team feels an open biopsy, craniotomy, is the next step.  The same surgeon will be perform the procedure and this will include opening his skull to get the tissue rather than doing it endoscopically like they had before.  I asked how quickly this would happen and it could be as soon as next week.  It will be a several hour procedure and require being admitted to the hospital once again.  He will have a repeat MRI beforehand to see if things have changed at all since the first one and give them a good picture before going in.  His hearing test that was scheduled for tomorrow is being postponed until after this procedure because he would have to be tested again anyways. 
While this news is very frustrating we want to make sure we have a definitive diagnosis and we aren’t subjecting Seth to any unnecessary treatment since the one for ATRT is very aggressive.
Now we wait to hear the dates for the next steps …

5 comments:

  1. Sending love, light, and prayers. <3

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  2. Keeping you all in my thoughts and prayers!!

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  3. My thoughts and prayers are with all of you.
    Marie (Mawre)

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  4. Sarah - I have a good friend who went through ATRT with her son and is now a patient advocate. She knows everyone and everything about this. I'm happy to put you in touch for any questions and support. It's so scary but you are in one of the best places in the world. Email me if you'd like contact info for Mel and Tym - their son is Declan. Sending prayers and good vibes to you all! Colleen - cmccretton@yahoo.com

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  5. https://www.jw.org/en/publications/books/dead-live-again-tract/dead-live-again/

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