Seizures linger and so do we

This will be Susan’s fifth night in the hospital in what’s become an extended stay. The UCLA neurological team continues to monitor her seizure activity while trying to find the mix of meds that will be effective at home. Meanwhile, her seizures linger.

Following Sunday’s 20-minute study, she began a continuous EEG yesterday afternoon that recorded at least 12 seizures in about 18 hours, mostly during the night. I observed two before leaving at 10pm. The staff witnessed just two or three more, so evidently there’s a lot of seizure activity that’s sub-clinical, noticeable only in brainwaves. As a result, they’ve increased some anti-seizure drug doses and added another 24 hours to the EEG study. Since Susan made the EEG bonus round, the attending neurologist gave me one of his "No Seizures" buttons. Don't be jealous. Our first chance for discharge may be Friday – but I wouldn’t be surprised to be here another weekend.

We enjoyed visits on Christmas from family and friends bearing gifts. The poinsettia that caregiver Jackie brought adorns Susan’s window overlooking Westwood Blvd. Being together with loved ones lifted our spirits. This was the first time in our lives we celebrated our Savior’s birth apart from worship in church and festivities at home. In spite of some sadness at being so disconnected, being sequestered was good in a way. We were removed from the American intensity of Christmas and left with quiet reflection on Jesus birth. Even if we lose the holiday trimmings, God’s marvelous gift in Christ can never be diminished.

Today was Susan’s scheduled two-month MRI and neuro-oncology visit. Since I made sure her MRI on Saturday also followed the oncology protocol, she didn’t need the scan today. I think that nixed about $6k in medical billing. At 10:30 this morning I simply walked next door and chatted with Dr Nghiemphu about all the weekend test results while Susan slept.

She confirmed that Susan’s tumor is mostly stable. While this is good news, she’s concerned that seizure activity could indicate tumor growth that’s not yet visible by MRI. We know that GBM tends to advance with microscopic tendrils, so I share her concern. We went back to a four-week interval for Susan’s next MRI and will take it from there. This is no different than the past 5 ½ years with incurable, progressive brain cancer. She's made it this far. We hope for the best, pray always, trust God, and are ready for anything.

The rest of the day has been busy with visits from the usual staff plus occupational, physical, and speech therapists. At different times. Add the nutritional counselor, BP readings and blood glucose tests, and Susan’s pretty popular. She also graduated from bed and spent the afternoon in the recliner.

I’ve seen no seizures so far in over 8 hours; but she’s been on increased Vimpat and a double dose of Ativan this afternoon, which may be enough to ward off an LA earthquake. It certainly warded off wakefulness and ushered in a deep, quiet nap. I’ll spend my third night here tonight. We’re thankful for God's peace, everyone's prayers, great medical care, and loving family and friends.