I always wanted to be treated as an intelligent adult, not someone of lesser status. So I would ask each medical person what they wished to be called. We would either both go by first names or both go by titles. I did not want to be called ‘Mom.’

During our little boy’s first MRI, I was very emotional, and wondered out loud if he could feel or hear what was going on even though he was sedated. The MRI nurse caught me completely off-guard by banging loudly on the side of the transport bed without getting any reaction from him. “See, he’s out,” she said. I was too startled then, but I wished I had told her how much that bothered me.

Doctors must deal with this disease over and over again. They can never really escape unless they change their careers. And, many, many times, they lose yet another patient. Our treatment for PNET/medulloblastoma lasted less than a year. While our subconscious is still filled with fear, at least the actual act of going to the hospital and receiving treatment is finite. If we lose our child, that also is a finite act. The doctors must deal with pain over and over again. In some ways it is so dreadful for them because they are the ones we look to for a cure. So, doctors now hold a very special place in my heart!

I found out late in my daughter’s treatment that short-acting, safe sedatives were being used for many children at the clinic to prevent pain and anxiety during treatments. Only parents who knew about it and requested it received this service. I felt that my daughter’s life would have been incredibly improved if we had been able to remove the trauma of procedures. I was angry. But I also realized that although I thought that they were wrong not to offer the service, I was partially at fault for not expressing more clearly how much difficulty she had the week before and after a procedure. I called the director of the clinic and carefully explained that I thought that poor staff/parent communication was creating hardships for the children. I suggested that the entire staff meet with a panel of parents to try to improve communication and to educate the doctors on the impact of pain on the children’s daily lives. They were very supportive and scheduled the conference. From then on, children were sedated for painful procedures. This is a classic example of how something good can come out of a disagreement, if both parties are receptive to solving the problem.

My son and I waited in an exam room for over an hour for a painful procedure. When I went out to ask the receptionist what had caused the delay, she said that a parent had brought in a child without an appointment. This parent frequently failed to bring in her child for treatment, and consequently, whenever she appeared, the doctors dropped everything to take care of the child. When the doctor finally came in, an hour and a half later, my son was in tears. The doctor did not explain the delay or apologize, he just silently started the procedure. After it was finished, I went out of the room, found the doctor, and said, “This makes me so angry. You just left us in here for hours and traumatized my son.” He told me that I should have more compassion for the other mother because her life was very difficult. I replied that he encouraged her to not make appointments by dropping everything whenever she appeared. I added that it wasn’t fair to those parents who played by the rules; she was being rewarded for her irresponsibility. After we had each stated our position, we left without resolution.