And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Monday, January 27, 2014

Day 1 Update.....Closed door?

A very WARM-hearted Howdy! from a very, very cold Mayo Clinic.  The air temp reads -12 degrees Fahrenheit at this present time of posting, but the windchill has it feeling closer to -42.   We have not ventured outside, but through the window, it definitely looks cold.  Even the locals are commenting on how this just isn't right!!!

We began our day very early this morning and have literally not stopped.  From mostly diagnostic testing and imaging, we did have one appointment this afternoon with our Neuro-Immunologist.  We generally welcome this appointment with this doctor as he has been the lead in focusing in on Princess' autoimmune component of her seizures.  He is a thinker and definitely educates us along the way, to that we are very appreciative.  

A) Please pray for Princess.  She has had four seizures today and is pretty exhausted due to her events.  Additionally, because we have been going non-stop since about 5 AM it has been a long day.  

B) The biggest update of the day came with the above mentioned Neuro-Immunologist.  Bottom line, he basically indicated that Princess' condition is maybe not necessarily and auto-immune condition anymore.  He indicated that since Princess has not responded more favorably to the prior auto-immune treatments that moving forward with chemo will probably not have any impact and that his concern with doing chemo was more focused on the side effects and the shot the immune system would take, over the potential for no favorable impact to Princess' seizures.  

That said, he indicated that their is really nothing more that he can do and we would be best to focus our time and attention with our Epileptologist.  This would lead to adding additional medications and/or other therapies like the vagal nerve simulator.  

This news is obviously a hit and it is not fun hearing your doctor say that your current situation is probably not going to improve (from an autoimmune approach).  So therefore, please pray for guidance and wisdom while we are here.  Please pray for our upcoming Neuro appointment that will take place in about an hour.  This next appointment will be with our Epileptologist, who is supposed to have been briefed on this previous appointment.  

Thank you to you all.  We'll continue to update along the way!


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