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

Wednesday, October 9, 2013

From the Inside of a Home....

What a relief it has been to be back home!  The walls of a home have never looked better!  We are also excited that Critter finally finished her antibiotic and is over her pneumonia.  Thank you for your continued prayers and thank you for your faithful follow-up.  Many of you have reached out to us and have wanted an update.  In the past it has seemed that "no news, is good news...", but unfortunately, that hasn't been the case.  While having a couple good days at home after our month long stay in the hospital, and dealing with Critter's illness, Princess began having more seizures.  This week eventually progressed to the point that we felt we had to have an emergency plan in place for Princess, just in case we were back in the hospital.

While we did not go back into the hospital over the weekend, we did have a pretty rough weekend with nearly 20 seizures over the course of three days.  By Monday, our Neuro wanted to admit us back into the hospital and begin doing PLEX again followed by chemotherapy.  That said, we weren't fully on board as the orders were only being relayed to us through other channels rather than being shared from our doctor directly.  This form of communication unfortunately doesn't allow for any feedback (one of our concerns and prayer requests in coordinating Princess' care).  Fortunately, we were able to get in some feedback and rather than being admitted to the hospital, we were able to be put on our Neuro's clinic schedule and had an appointment with him today.

Praise the Lord for our appointment today.  In a managed care system that is broken and unfortunately doesn't allow for the patient's cares and needs to be fully addressed, we somehow spent nearly 3 hours with our Neuro.  Specific prayers were answered as we 1) were finally able to share a complete history of Princess' seizures; 2) had effective communication regarding Princess' care; 3) thoroughly reviewed Princess' seizure journal that was recorded while in the hospital; and 4) evaluated whether PLEX served any benefit.

So there we were, visiting with the Neuro and finally getting our chance to visit and share uninterrupted and feeling that we were finally getting to share Princess' story.  What a great feeling!

So, what came of today?  Bottom line, the doctor agreed that Princess' treatment over the last month did not provide us with enough evidence that it worked.  Additionally, the doctor was able to see that prior to our hospitalization, Princess was doing better than she has under his care.  The evidence provided was an eye opener, but it also meant that treatment options were still being limited with each proposed treatment's failure.

From here, we now see ourselves moving in the direction of chemo.  Specifically, we'll be looking into doing the drug Rituxan.  This particular chemo agent targets a specific cell in the body, which will basically suppress the immune system and hopefully wipe out the antibody that is the supposed culprit of Princess' seizures.  We are still days away from doing this, but we have a clearer picture of what is ahead.  In the interim, we have to get through day upon day of having seizures.  Just a brief glimpse- Princess has already had 32 seizures just for the month of October.  Seventeen of those have been since Sunday.  So we covet you prayers, and thank you again and again, for being on this journey with us.

Prayer Requests:
  • Our Neuro's heart and that he would come to know the Lord.
  • Strength for Princess as she is continuing to have so many seizures.
  • Peace with starting Rituxan, if this is where the Lord is leading us.  
  • Better communication with the Neuro team and how to best handle these seizures
  • More of a multi-disciplanary approach through Southwestern as they are telling us it might be next year before we can see some of the docs that Princess' neuro wants her to see.

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