All, here is a very overdue update on what is going on.
We went to the NIH on December 20th to get their take on the situation. They concurred with everything our NeuroOncologist stated a few days prior - new growth and a developing “shadow” on the brain stem. They really didn’t have a trial with any promise for either situation, and agreed that our best course of action was to continue Avastin as long as it was comfortable, discontinue the CCNU (why take chemo when it obviously is not effective?), our choice on the SurVAXM treatments.
With this new information, we decided to settle in with family to ride things out. At this time, Darrell has gone onto hospice care, as the only treatments he is currently doing are primarily for comfort. SurVAXM is still an option because it was not being covered by insurance and is therefore not a conflict. The next dose of that would not be until March anyway.
Many of you have tried to reach out to one of us (or both) directly either phone or text. It is appreciated, but depending on how each day goes, we may not get back to you timely. Please do not take offense, each and everyone of you is held in a very special place in our hearts and your support through this entire journey has been truly amazing and deeply appreciated.
I will update as new information becomes available.
Bless you all, and F*ck GBM!