Last week’s challenges have not abated. While Susie’s motor deficit decline has stabilized, her ability to speak is impaired. Her control of motion and speech is better in the morning. As the day creeps along, it is more difficult for her to talk and do things herself.
I’ve noticed that Susie is coherent and has closer to normal speech patterns in the middle of the night (i.e. midnight/ 2 am) or first thing in the morning. So, we use those times to chat about what she has saw/ experienced and what/ how to proceed. It sounds like she’s mentally in her head observing what is going on, but her body is missing part of the message of what she wants it to do. Almost like her brain is experiencing interference/ noise/ gaps in transmission. It is obviously quite an agitating experience for her.
She found being mid sentence and not being able to come up with a word or finish a thought particularly frustrating. When this started to happen, we talked about settling on a word that we could use as a substitute and highlight the disconnect was happening. She was using ‘no’ a lot, but that word does not work when you are playing a Q&A guessing game. The two top contenders were ‘whatever’ and ‘sillypants’. Susie chose ‘sillypants’, though Pearl started to use ‘sandwiches’ as a joke and it almost supplanted ‘sillypants’ Monday evening.
Susie’s sister, Ann Sharp, came in this week to help out. She flew in Monday night and joined us starting on Tuesday, everyday around 11:30 am. Each day was different. Susie had a terrific day with Ann on Tuesday, but Wednesday evening/ night was very exhausting, Thursday was better and Friday was a repeat of Wednesday. Saturday, Susie’s cousin Amy Jones came over for lunch. I think they had grilled cheese sandwiches and a pineapple cake. Susie also did two walks on Saturday, one in the morning and one in the afternoon. It was a beautiful day.
The plan forward is to taper off the steroids in a safe but fast fashion. So, we’ve reduced her IV solu medrol steroid from 200mg daily to 50mg every Monday, Wednesday and Friday and her dexamethasone pill steroid from 1mg twice per day to 1mg on days she is not taking solu medrol. This regiment will likely go for 2-3 weeks (i.e. to end of February). Her platelets are much improved, she is now at 45k. For now, she will continue the IVIG/ octagam once per week.
We head to MD Anderson on 24-FEB. We’ll review with her Neuro-Oncologist where she is and what the next steps should be. Hopefully, Susie will have improved with the reduced steroids.