Seriously?

This afternoon Anna was diagnosed with PRES, a condition in which parts of the brain leak fluid due to suddenly high blood pressure, more often occuring in patients who have recently undergone chemotherapy.  Feel free to "google" it if you want more information.  Apparently, it is not very common; even the nurses had to look it up after the diagnosis was made.

Last night Anna had a detailed MRI done of her spine as well as a quick brain MRI.  These tests began at about 10 p.m.  Anna was intubated to "protect her airway", which was probably a good idea since Matt and I weren't the only ones worried about the cancer growing again.  Anna came back to the room at about 12:30, but we were told that the results would not be read and made official until sometime in the morning.  Matt and I were very prepared to hear the worst, that in the 2 1/2 weeks since Anna had targetted radiation her cancer had grown back.  All of Anna's symptoms yesterday were similar to the symptoms in the days leading up to her having difficulty breathing.

The good news from the spinal MRI was that the lesions from the cancer were much smaller and that the inflamation usually attributed to radiation had subsided.  The good news was also that there were no blockages in her spine causing her weakness in her extremeties.

The bad news was there was no answer yet for her changes.  The quick brain MRI, however, showed some changes since her scan from April 4, so a decision was made this morning to have a detailed MRI done to learn more.  At the same time, the doctors also wanted to do another abdominal ultrasound to check the fluid pocket in Anna's abdomen.

At that point, Matt went back home and I stayed to deal with things here.

Anna was doing mildly better this morning, but was still much worse than she was on Friday when I was here.

Nothing happened for much of the morning because Anna had to be NPO (nothing in her tummy) for several hours before anesthesia again, and she was sleeping much of the time.  I was getting frustrated because we were being given minimal information about Anna's changes.

In our months here, I have learned what words to use and to whom to speak if we want things dealt with in a timely fashion.  After a few conversations/questions on my part, the "right" people came to talk to me and give me a few possible scenarios.  One idea was that the fluid in Anna's abdomen was infected and causing a different kind of infection in her brain; another thought was that Anna had some kind of blockage in her brain; the third idea was PRES.

Anna's MRI happened earlier than expected (which is a wonder in itself after the lateness of the past few days' procedures and tests), and the results were shared with me even before she was back from the procedure to suck out some of the fluid in her abdomen.  The neurologist (different from the neurosurgeon) met with the infection disease team as well as the PICU team before discussing things with us (Anna's primary nurse and me).

They shared several things.  First, Anna's ventricles are still slightly inflammed, most likely because of the recent infection.  Second, there is a bit of extra fluid between Anna's brain and her skull, probably due to the placement of the drain.  Third, the original tumor is much smaller than it has been on any previous scan.  Fourth, Anna has PRES.

This syndrome is responsible for all of Anna's recent neurological changes, is caused most likely by her recent higher blood pressures, and will clear up on its own once her blood pressure is under control.  The doctors met, discussed, and agreed upon a medication plan for her hypertension.  The fluid should be cleared up by Anna's body within 1-2 weeks, probably closer to 2 weeks because of Anna's current health status.  Sigh.  Until then Anna's rehab is pretty much back to square one.  But at least we know what kind of progress she can make, given the opportunity.

Fear, exhaustion, relief, anger, sadness, frustration ... all ... over ... again.

Thanksgiving
Please give thanks that Anna's recent neurological changes were not a result of the cancer.
Please thank God that Anna's condition is reversible.
Please give thanks for the people with whom we work at the hospital; some of them really know how to get things moving :)
Please thank God for the support our family continues to receive.
Please give thanks that I was able to take a nap this afternoon while Anna was having her MRI.

Requests
Please pray that Anna's body is able to quickly and easily deal with the extra fluid in her brain.
Please pray that Anna's neurological status improves faster than expected.
Please pray that Anna's blood pressure comes down.
Please ask God to continue to grant us peace, rest, strength, and wisdom.  (This list keeps getting longer.)
Please continue to pray for Anna's care staff at the hospital.
Please pray for a little guy, Tyler, whose grandparents I just met.  He is 10 months old and on the way to Children's because of respiratory distress.

Thank you for your thoughts and prayers; I don't know how we could do this without God's strength.