Post BMT +154
+154
Day 13
Tribe, we need some extra prayers.
Tate had her LP this morning. Tim and I packed up and loaded the car. Shortly after, we were told that white cells and high protein were found in Tatum’s CSF. Slam on the breaks and shift gears. Immediately, csf lab panels shifted to ruling out bacterial and viral meningitis. That is where we are currently sitting. Most of the viral/bacterial panel is back -all negative. That is leaving us with a brain disease process. The worst option of the 3. When told this morning what was found in her CSF, I cried tears of relief certain this had to be meningitis and that this was treatable and once again felt like we could strive for healing. We are now sitting on the other side again.
Tate’s BMT Dr. Is running a chimerism (never been done) on the csf white cells to see if these are donor cells or her own attacking her brain. She is headed for a brain MRI at 5:30. Steroids would be the next step in treating the brain inflammation.
The roller coaster of emotions today has been extreme. From a hopeful high to once again a defeated low and everything in between. Tates tremors started to worsen again last night into this morning. The anesthesia gave her a bit of a break for awhile. She is not herself since waking and has slept all afternoon.
Please please pray for diligent Dr’s who will think outside of the box for both diagnosis and treatments. Please pray this is temporary or at minimum stable disease and our worst fears of neurodegenerative disease are not recognized. Give thanks for the team that is diligently working on this today. Pray for Tim and our Bigs. Our family needs time together without the constant stress of the unknown medical looming. Please pray that Tate can get through the brain MRI without sedation. This is a difficult test for her due to past association with a med reaction and years of medical trauma. Thank you for the prayers.