This is the very prompt reply to my question.
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Dear Rachelle,
I am so sorry to hear about Constance. NBTS and I will do everything we can to make sure the most appropriate tests are done. I will start working on this by e-mailing the appropriate professionals. Any additional information you can provide on the diagnosis and treatment of Constance would be important. Please send me any information you have and I will make sure we get input from the most appropriate leading experts (Neuro-oncologists, pathologists and brain tumor researchers) for what type of tests should be done.
Please do not hesitate e-mailing me or calling me if you have any questions.