Two weeks ago today at this time I was in the backseat of a car, trying desperately not to get carsick, on my way to John’s Hopkins Hospital with my mother and younger brother. My mom had finally gotten word that a skilled pediatric oncologist who specializes in tumor development was available to see her. This is the only guy that we know of who has seen multiple cases of her disease, and he is a forerunner in the race to find a way to shrink or eliminate the microphages/tumors growing throughout the body of ECD sufferers.
This is a good thing. We had waited for this appointment since around the first of the year, and I had been trying to convince my mother to go for it seems like ages. While I totally appreciate her perspective of not wanting to be a guinea pig or on display for a classroom, this guy merely wanted a consultation. He got copies of her tests for the last ten years and then just gave a cursory physical (listen to the chest wall, the heart, look at eyes and ears, etc.). When word had come a scant week before that he was available we made the arrangements to go quickly, my brother took some time off work, I found a dogsitter, and on a train we rode the day before.
It’s interesting, traveling with your parents as an adult. Continue reading