After roughly 6 weeks we returned home. Julia was weaned off the steroids and it appeared radiation treatment reduced the tumor. (It is often very difficult to wean people off of steroids since the body becomes extremely depend upon the drug). Further, Julia had regained use of the right side of her body including the ability to walk alone. Julia no longer took the experimental drug combined with chemotherapy, even though at the onset of radiation she was scheduled to continue treatment after radiation. We were told that test results had shown that the experimental drug/chemo therapy had no effect on the brain stem tumor, so we chose to no longer proceed with drug therapy.
Within a few weeks and after a trip to Europe to see family (which was graciously funded by Make-A-Wish Foundation), Julia, once again, lost mobility in the right side of her body. She then complained of headaches and nausea. After a scheduled MRI, the physicians determined that she had hydrocephalus (excess cerebrospinal fluid in the brain) and radiation necrosis (destruction of healthy brain cells resulting from radiation exposure). So a few days before Easter, we immediately admitted Julia into a hospital in Memphis.