12/14/2021 0 Comments April 7, 2019Josephine's status has not changed. We are still at Cornell where she has been induced in a coma due to uncontrollable seizures. This is a good hospital and a good team of doctors. We had a meeting last Thursday where we were informed that she will most likely not be able to overcome the seizures. They tried different combinations of meds all last week. They took the EEG off on Thursday to give her head a little break. It was nice to wash her hair and untangle it. I am still holding on to hope even when they tell me Josephine is not coming back home. It would be very difficult to go on without this hope I have.
I asked if they would allow me to continue her ONC201 medication that we purchased in Germany as her tumor needs treatment. They will also continue to try balancing the meds in hopes of controlling the seizures. At this time of the year, we start making plans for spring and summer, spring break, camping, beach, and biking. Pep likes sunny days as much as I do. How can I ever enjoy a sunny day without her when she has been our sunshine? She lights up every room she enters with her smile and beautiful spirit.
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