May 29, 2019

Our dream and happiness at Children’s Specialized was short lived. Josephine developed hydrocephalus (excessive buildup of cerebrospinal fluid) overnight two days ago and was transferred to the PICU of Robert Wood Johnson University Hospital located right next door. Her pupils were enlarged and unresponsive, the doctors installed an external shunt as they didn’t want to use the Omaya catheter to get rid of excess fluid. They were not comfortable tapping it. I was told there was severe brain damage and the prognosis is poor. I understand hydrocephalus is a common potential problem with DIPG and could have been avoided by installing a shunt in advance as a precaution. No oncologist wanted to do this in the big hospital in NYC or follow up on Josephine’s tumor at this very advanced state. I could not even get a doctor to order an MRI for her and see the status of the tumor in the past two months. Famous oncologists of this reputable NYC hospital don’t think it is worth pursuing treatment once the tumor is in progression. This is not how research facilities should operate. I am sorry we don’t have better news for us and for Josephine. She constantly put 100% of herself into fighting this disease and the system has failed her, not only for not having a hope of treatment, but also for not even trying.
We are deeply grateful to you all for your support and prayers. They are the hugs we received throughout this long journey. In behalf of Josephine, thank you.