Wednesday, September 12, 2018

Getting ready to start Car-T

Jen has been doing well with rehab and will most likely remain at Huntington through next Wednesday, although she may come home as early as Saturday - it's still up in the air.  Her mobility and balance have improved.  From my observations, I believe the dexterity in her right hand has improved over where it was at pre-surgery, but Jen disagrees.  Her seizure activity has also lessened significantly.

Jen's communication ability still continues to be her greatest challenge.  She is often frustrated with her difficulty in conveying her thoughts or wishes, but with patience she is usually able to get at what she wants to say.  Sometimes though she will just say nevermind or forget about it.  Her short term memory and cognition are also a frequent issue.  In spite of all of Jen's challenges, she still has a lot of fight in her and is excited and hopeful about beginning the Car-T injections.

This Saturday she will be having a bunch of scans- MRI, CT, & PET.  This is all part of the trial protocol in order to establish a baseline prior to the Car-T.   Jen will receive her first injection on Monday of next week.  She will continue to receive injections every Monday for an additional 3-4 weeks with additional labs and follow ups every Wednesday & Friday.  She will also need to continue with outpatient physical, speech & occupational therapy - so our schedule will be pretty packed for the next month.  We are both hoping that this will be a major success for Jen - we probably won't know for a little while.

If you would like to visit Jen while she is still at Huntington,  she is in room 4114 of the  LaVina Bldg at Huntington Hospital 100 W California Blvd.  Please schedule any visits through me.   As always, please continue to keep Jen in your thoughts and prayers.

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