Having Patricia back 'with the family' in North Carolina being looked after by her parents gave her child status again at the age of about 38 years old or so. That time when 'child' tends to take over when an adult turns forty. No, she never got involved directly in a relationship with another man. I am sure it is not difficult to believe Patricia believes in virgin status. Okay? At this point in her life I doubt if she would remember if she was ever taken advantage of. She lives a mostly sheltered life with very few friends but there has been times with 'system issues' the question has come to my mind. There was no sense to ask her about being violated in some way.

What occurred with Patricia was instead, her surrender to the tumor. She surrendered 'the fight' to survive at the level of maintaining her self identity to others and those others didn't see her as 'the individual woman' so much as a patient who was still alive. All damage was attributed to 'the disease' and not the lack of effort to completely keep her intact; mind, body and soul. She suffered immeasurable damage at Duke.

One Sunday Morning after a craniotomy to perform shunt revision which Patricia's set back was attributed to, I came early. Very early. 5 AM early. Patricia and I watched "Sunday Morning" that day and a show on a PBS station about being a maestro. You know 'constructive baton twirling' to conduct great orchestras. It was during the 'maestro' television segment that Dr. Allan Friedman walked in to say "Good Morning, Patricia, how are we doing today?" He was not with his students. They would follow behind him by about thirty minutes. During our brief interlude I didn't give away my medical background, did introduce myself as her sister, he didn't recognize the name which I left repeatedly at his office with phone calls and asked him if he had a heavy patient load.

He responded by diverting attention to the program on PBS and suddenly I knew I hit a nerve. After a brief overview of Maestroship, he left the room and a dutiful, "Have a Good Day."

His students followed. They were lead by a man in a white overcoat, a Chief Resident to Neurosurgery at the time. He already was a surgeon of Gastroenterology and wanted to perfect his techniques to become a neurosurgeon. I never said Dr. Allan Friedman was an incompetent surgeon. Quite the contrary. He has excellant skills. Just untimely ones, so by that measure one might say there is incompetence. This 'Chief Resident' who did not introduce himself to me but had his name embroidered on his labcoat and didn't care what was on television. He spoke openly in front of me without to many details that would upset Patricia, stated she was doing well all considering and politely excused himself from the room and the rest of the students at different stages of learning and achievement, approximately a dozen of them excused themselves in the same fashion. I was reasonably impressed with him, hugged Patty "Good-Bye" for the day and went home to my investigation and telephoning.

I learned about him and called. He returned my call. He stated he remembered me that morning. It didn't take much to learn 'the truth.' He was more than willing to speak to Patricia's current circumstances. I promised him I would say nothing if we could stay off the record. I wanted my anonymity as well. It provided 'the power' in the circumstance I was seeking and it was 'the resolve' that was the goal. He agreed. I am grateful to him.

I stated to him my view of 'the deal' and he agreed. Patricia has been under 'Duke Care' now approximately a year and a half. All her records had been forwarded from Massachusetts and Ohio, there could be no doubt this patient was a bit unusual. It would not be wrong to call and speak with others regarding her care and their experience. Under Allan Friedman, Patricia had gone into incompetency and it was not the result of the shunt.

A characteristic of Patricia's tumor is a form of cystic development. In other words, the tumor manifests fluid filled cysts from time to time. The tumor, astrocytoma had grown but it also spawned several cysts that were now crowding the ventricles of her brain. Her hydrocephalis was worse because of it and those were the 'signs' we were reacting to and the signs Mr. Wonderful always reacted to. There were 'hallmarks' of personal behavior that triggered 'issues' with shunts, hence, the large number of shunt revisions between Ohio and Massachusetts. Never was it ignored. Hydrocephalis is a dangerous condition. It can herniate a brain stem. One of the issues during this episode with Duke was their 'glibness' regarding the shunt and the need to pump it from time to time.

The circumstances to obtain help for Patricia became rather dire. This time I was not going to be detered by family or friends or collegues or anyone, I wanted answer and I wanted them now. She was, at this point, chronically tremulous on the left side of her body when awake, had a PEG tube for feedings as she could not swallow, could answer yes and no questions appropriately when asked by shaking her head but could not speak. I literally broke into the emergency entrance that night when I was denied access through 'usual' methods. As I entered the hallway of the emergency rooms I began to look for her in suite after suite when I was suddenly greeted by a large male nurse asking me, "What do you think you are doing?" I simply stated, "I know what I am doing, I am just not so sure you all know what you are doing. I am here to see my sister and I won't be stopped ! Where is she !" He gave me one odd look, grabbed me by the shoulders and took me aside in a storage locker near the hallway. He stated, "Now, look, this is Duke Medical Center, we are a Level One Trauma Center and the hallway you were in is the main 'run' for the helicopters. If you simply will calm down, I'll be happy to take you to your sister."

He did. Patricia had deteriorated far too much at Duke. These nurses, residents and interns see these issues of the same patients all too frequently. I am sure I was not the first family member this desperate for answers.

When I reached her, I asked Patricia if she wanted Mr. Wonderful to come to look after her. She did. I never called him. I knew she knew the severity of the lack of care and she was also trapped. With her ability to exhibit yes and no she could help me obtain freedom for her to go some place else for care. By bringing up Mr. Wonderful as a solution I knew she would cooperate. She was completely powerless and 'Dear Old Dad' was out in the waiting room that I had left, just waiting to make the next mistake, covertly concealed as advice in decision making. I saw a phone on the wall and grabbed my 'Charge Card' to find Janet Bay. I found her but it was too early to call her office and I began to make arrangements to have Patricia flown to her when I was interrupted by the physical appearance of Dr. Friedman and a collegue. See, nurses' ain't stupid and the large male nurse that interrupted me also interceded for me and 'shook the guy up' enough to get his attention. I read them 'the riot act about Patricia', including the fact she more than likely had a cyst of which was causing her problems and that required a more delicate and lengthy surgery than 'just' a shunt revision. I told them they needed to 'get it' right this time and soon as she wasn't doing well and now they had someone who was upset enough to do anything it took come hell or high water.

Patricia was put on 'The Waiting List' for surgery that day, about seven hours later she was in the Neuro Intensive Care Unit doing better. This time, our father signed 'the correct' surgical consent explained to him it was necessary to enter the ventricles to remove additional growth of tumor as well as some cyst development. Dr. Allan Friedman, great neurosurgeon that he is, did flawless surgery and I didn't give a God Damn what other itinerary he had for that day or that moment.

She recovered a short time at Duke but made her most stunning recovery ever at Forsyth's Whitaker Rehabilitation Center under the care of their physiatrist, which was also a covert operation by me on her behalf. She went to Whitaker unable to walk, unable to talk and unable to swallow while still trembling somewhat on the left side of her body while awake. When she left four weeks later, she could speak minimally but was also using a small, simple computer that spoke for her with the touch of a button to let her wishes be known, she walking with a walker that had handbreaks because she was able to initiate her movement forward but could not stop yet, she was beginning to eat autonomously while still receiving three tube feeds a day rather than five and she was able to smile again.

Today, she is cared for by people at Baptist Medical Center who don't have rigorous promotion and sales meetings. The problem today is still 'the system' and the inability of her care givers within the family to initiate appropriate treatment for her. But, although she does not conduct her social affairs well and is resistant to any type of surgery, we are managing but it isn't easy. She really doesn't want to have this radiation treatment that Dr. Ellis is supporting and that I know will prove her longevity, she knows there is no saying no to me. Eventually and in a timely fashion she'll find herself receiving care she wishes just would go away.

One other minor detail, as if he did this so the entire world knew Patricia was an unusual case; when Dr. Wilson at Baptist/Wake Forest took on 'the case' among the first items on his agenda was presenting a global conference via the internet on large screen television with appropriate language over ride to his collegues without ever leaving Winston-Salem, North Carolina. If need be, it could have been rescheduled.