My name is Severo and I am Cyndee's father. I want to share with you my experiences with Cyndee’s systemic lupus erythematosus.
I was a very busy family physician in Chicago delivering babies, assisting in surgery of my patients, doing industrial office surgery, and caring for entire families. We were living some 25 miles away from Allport Medical Center where I worked from 8:00 AM to 5:00 PM.
I was a devoted father of five children, eating supper and breakfast with them most of the time. I attended their little league games, tennis tournaments, gymnastics events, symphony performances and ice skating competitions. We loved family bowling competitions. We had a lot of fun together. We attended church every Sunday. My wife, Florence, did not cook on Sundays, as we ate in restaurants.
One day Cyndee complained of a very painful ankle after competing in a gymnastic event out of town. She claimed that she did not fall or twist her ankle. Her ankle was not swollen, warm or red. Our family doctor took x-rays and they were normal. Why was she in such pain? She had to use crutches to go to school! After a few days at home the pain left.
Then one day she woke up with a very high fever. She was tired and weak. Aspirins and cold packs did not get rid of the fever...it persisted, so our pediatrician hospitalized her thinking that she may be coming down with measles that was rampant in school. I could not figure what she was suffering from. Then one night her mother noticed a rash about her face and reported it to the intern. He said it was a “butterfly” rash and told her that she might have lupus. I was bewildered because I did not know what lupus was. Medical school and internship did not acquaint me with this condition. I looked it up in a medical book and I was devastated. The prognosis was at least ten more years of life!
Our pediatrician and our internal medicine consultant also had no experience with lupus. Dr. L.L. Braun called in Dr. Robert M. Kark, a White House consultant from St. Luke’s Hospital. Dr. Kark did not make out of office consultations, but he did agree to see Cyndee on Sunday. Sunday came and our family was at bedside waiting for Dr. Kark, but he did not show up in the morning. After lunch a man dressed in overalls with suspenders and a long beard entered the room. It was Dr. Kark! After introductions, he looked Cyndee in the eyes and asked her if she was losing hair and she said she was. He asked her if she was allergic to the sun, if she was tired and fatigued, if her joints hurt. She admitted. He told us that Cyndee indeed had lupus. He ordered Prednisone and to amazement her fever went down and in a few days Cyndee felt well again.
I wanted to be near her, but my job demanded my presence at work. Fortunately there was an opening for a director of Family Practice Residency Program at Illinois Masonic Hospital. I applied for the job and was accepted. As a Clinical Associate Professor for the Abraham Lincoln School of Medicine, I did not have to deliver babies anymore. I delegated all patient care to the intern students. My nights were free so I then could be with Cyndee.
A few days later Cyndee was discharged. We took her home. Since I did not know about lupus, I did extensive reading while Cyndee spent time with her newborn brother, Paul. They were enjoying each other. Then one day Cyndee asked me what was wrong. I did not know how to break the news that her life expectancy was only ten more years of life!!! I invited her boyfriend to come to the house and then I sat them at our dining room table and opened the Merck Manual for them to read all about lupus. I left them alone and cried in the bedroom.
My girl, who was such an active student, planning to compete in the gymnastic events at the 1968 Summer Olympics in Mexico City, an honor student, active with the Girls Athletic Association, an excellent bowler and an active volunteer Candy Stripper at Illinois Masonic Medical Center, was home with an “incurable disease” as it was noted in medical literature.
She had several relapse that hospitalized her. Each time it looked worse. Then one night as I visited her at St. Luke’s Hospital, I noted that she had an intravenous bottle with 10,000 mg of cortisone, when the usual dose is only in to 10’s. I thought it was an overdose and called the intern who told me that is what Dr. Kark ordered. Cyndee was told that her iron content in her blood may be obliterated and become severely anemic and many not live if the side effect happened. She took the risk, as Dr. Kark said that this treatment was only for a day or so and could improve her kidney function. She was at the verge of getting uremic, a very poor prognosis. I had my hands tied; I did not know how to treat lupus. My associates at the hospital also had no knowledge on how to manage this autoimmune disease. The body against itself!!!
The “Pulse Treatment”, that’s what Dr. Kark called the 1,000 mg of steroids, worked!! She was up and about after a week or so in the hospital. Dr. Kark turned Cyndee’s case over to a medical fellow, Dr. Oyama. She discovered that he as the brother of one of her physical education teachers and felt an instant bond. She was happy and, as long as she was happy, we as a family were also happy.
Because she was on high doses of prednisone, her hips started to get aseptic necrosis. She underwent several hip prosthesis procedures.
During all this time, Cyndee’s boyfriend, Bob, was always around. I indoctrinated him with the prognosis of lupus, which he understood. They go married and he decided to take her to Arizona, away from the terrible winter months. I was worried because she was to stay away from sunlight that could cause relapses.
When Cyndee was in Illinois, she was in a wheelchair, but after only a few days in Arizona, she was walking without even a cane of walker. She and Bob were enjoying life in Arizona. For several years Florence and I would visit Cyndee and Bob. I remember one winter it was 40 degrees below zero in Chicago when we left for Arizona and landed at Sky Harbor Airport in Phoenix meeting Bob in shorts and Cyndee in a short sleeve blouse!!!
In the summer of 1997 my wife and I visited Cyndee and Bob and attended the Annual Lupus Convention in Phoenix. Each time we visited them Florence would tell me that she wanted to move to Arizona, but I had to work. She asked Bob to take us around to look at houses. We liked a house that was only 3 miles away from them.
As soon as we got back to Chicago, I informed my employer that I wanted to retire. I handed in my resignation while my wife flew back to Arizona to finalize arrangements for the house. We were able to arrange our financial obligations and I sent letters to all my patients informing them of my retirement and that another qualified family physician would take care of them.
It was bitter sweet…retiring, saying goodbye to our church family and my Masonic brothers and many friends and patients was sad. Even our favorite Chinese restaurant maitre d’s were saddened by our leaving Chicago.
In October, 1997 we left Chicago for our retirement life in Arizona.
In 2001 Cyndee had to have her left hip prosthesis replaced, but the new one was loose and had to be replaced, but it got infected. So the new prosthesis was taken out and the soft tissue that was infected had to be debrided anad cleaned out. She was bedridden for two long years. During this time her mother and Bob were her personal caregivers. Cyndee got her new Titanium left hip prosthesis and after rehabilitation and physical therapy she was able to walk, leaving her mobile wheelchair.
We thank God for all the many blessings and healing that He has done for us as a family.
With God all things are possible. ~Matthew 19:26.
My dear daddy passed away on December 20th 2011.
Go back to Impact of Cyndee's Lupus On Her Family
Go back to Cyndee's home page.
Copyright © 1997-2017 Cyndee Miller
Page Last Updated: Sunday, January 1, 2017