It has been a while here, we are approaching our 7th week at Cornell ‘s pediatric intensive care unit. It has been a roller coaster of entangled hopes and disappointments. Josephine has endured infiltrated veins, spikes of fevers, low blood pressure, elevated heart rates with periods of stability in between. The uncontrollable seizures have quieted down decreasing and damaging her brain activity. In her current state, she has been rejected from other facilities that would bring us closer to home. Pep sleeps most of the time with some periods of awakening but unaware of her surroundings. She responds to annoyance or stimulation thru fluctuations in her vital signs.
We miss our old Josephine, she misses us, but we are still together. I am grateful I can still hug her and kiss her. She can still enjoy our touch and she knows we are here for her. That’s all we can do, love her as always.
I wish I had better news. I wish I could report a miraculous recovery...but this is the reality of DIPG. She is still fighting it as the strong girl that she is.