Radiation Day 15, the longest day!!

2 hours at radiation, 2 hours at the oncologist, 1 hour waiting in line at the tax collector’s office to get our tags ( which did not happen because Greco was crying ) another hour at my own doctor’s appointment and then 1 hour soccer practice! Dr. Stapleton’s visit was not encouraging. Too much bad news. Stories of 2 other patients that are relapsing. I asked if we would have Greco in the Spring, and she could not say. She could not say. It is almost October and I may not have my baby in Spring. NO! I will not accept that!!! Dr. suggests another MRI in December to know more about the timeline. He may have to restart steroids to reduce swelling. But not sure I want the side effects of that. After MRI he could start chemo, but I don’t want to make Greco sick, if there is no guarantee.

Sweet Greco is such a trooper. He is such a brave boy. He is taking all of this in stride. Some days are harder than others. He has never once touched his port, or needle, or tubes. When they put him to sleep now, the second the propophal hits his veins, he calls my name. “ Mama, Mama, Mama” he calls out! I always hold him close and whisper in his ear, “ Mommy loves you, Daddy loves you, Jesus loves you”, until he is asleep.

#diffuseintrinsicpontineglioma #grecoromanbouzakis #pediatriccancer #livegreco #takedowncancer