I had to talk to all of her schools. I told a couple of key people at the school, so they understood that when she said, “I have to go to the bathroom,” she had to go. My daughter also courageously went to school with a pouch. She is so incredible about it. She laughs about it, but that is hard in high school.
Working with the School
Here’s what we did: we obtained all of the CCFA brochures and books from his doctors and from the mail, and before he returned to school, I actually made an appointment with his headmaster. I typed up a one page summary of the disease, the treatment, and what had been going on. For instance, at the time, he was on Prednisone, and I thought it was important for them to know what Prednisone does for you and what its side effects are. It’s important for them to know that if a child in this situation asks to use a bathroom, it means they need to use a bathroom. What I did was to prepare the brochure and a one or two page document, and brought it to the headmaster before school began. I asked him to share it with whomever he felt he needed to. We asked him also to keep the situation confidential, and we believe that he did to a certain extent. That’s what we chose to do for school.