From Here To Serenity

CHAPTER 3: Will My Child Live? Our family’s existence hung suspended the day we found our daughter’s life was in danger. I first noticed something was wrong when Connie was eight years old. Always slim and petite, she began to get chubby. At first I thought it was just baby fat and that she would outgrow it, but then her face began to widen and looked unnatural. I knew in my heart something was wrong. I tossed and turned all night, worrying. I’ve always had a strong faith and I prayed begging God to help our daughter. As she progressed from nine to ten she continued to gain weight, her face widened even further and fine hair began to grow on her face. Connie seemed healthy in every other way. Determined to get to the bottom of the problem, I took her to our family General Practitioner. He examined her, smiled at my concern and said “she’s just eating too much. Keep her away from the refrigerator.” He made me feel as if I were an over-anxious mom, and that I was being foolish. I knew that something dreadful was wrong with our daughter, and I had to save her. We began making the rounds of doctors. They all said nothing was wrong. One day the school nurse told me about a well-known pediatrician in town. I immediately called and made an appointment. I prayed we would soon have the answer. I believed it must be a chemical imbalance of some sort and all that would be necessary was a shot or a regimen of pills. I was right. It was a chemical imbalance, but it was far from simple or easy. After examining Connie, the doctor said, “She has a textbook case of Cushing’s Syndrome. I’ve never seen one before, except in the books. It’s rare, but I’m certain that’s what it is. I assume you want to do whatever is necessary.” “Yes, absolutely.” “Connie will have to have surgery. However, there is a high mortality risk in this type of surgery,” he went on to say. A knot of fear formed in my stomach. I could hardly speak. It had always been difficult for me to express my feelings. I stuffed them inside and put on a brave front. Holding back the tears so I wouldn’t upset her, I drove my daughter to the hospital. Protecting Connie from my own fears became the anchor that kept me from falling apart. She underwent two weeks of tests. I later learned that the pediatrician called our General Practitioner and informed him, in no uncertain terms, that he had blown the diagnosis. After admitting Connie to the hospital I drove home in a daze and phoned my husband Ted at work. Frozen with fear, I couldn’t seem to get the word “tumor” out. My mother-in-law who was caring for the boys, gently took the phone from my hands and told him. He came home at once. Connie was our baby. We were both filled with fear and worry. How could this be happening to our perfect little family? The surgeon explained, “Cushing’s Syndrome is an extremely rare disease” (in fact Connie was the 18th documented case of Cushing’s Syndrome, and she was later written up in medical journals all over the world). Connie’s case consisted of a tumor on her left adrenal gland which caused it to be overactive. “The Cushing’s Syndrome has caused her face to widen, and the disease has kept her from growing to full height or developing normally.” The disease had also caused what is termed a buffalo hump on her back. In addition, her blood pressure was higher than most 60 year olds, which should have alerted the other doctors that there was something seriously wrong. Connie had surgery two weeks later. Before she was taken into surgery Connie told us, “All your Christmas presents are wrapped and in a corner of my closet.” She had amazing depth for a child of ten. She must have had some doubts about whether she would come out of this alive. The surgery was eight hours long. The surgeon was thoughtful and had a nurse call midway through the surgery to let us know everything was going as expected. I remember getting a stiff neck from watching the green double doors waiting for the surgeon to appear. I tried to read but the letters danced before my eyes. The surgeon finally walked through those doors. His face was haggard as he said, “Connie’s doing well. I had to remove the left adrenal gland along with the tumor. Her right adrenal gland is atrophied. I don’t know whether the right adrenal gland will become normal with time or whether she will have to be on medication for life. I also had to remove her spleen because we damaged it in the process of removing the tumor.” The sight of Connie under the oxygen tent with all the tubes and wires going in and coming out of her so drained Ted that he went to his knees at the sight. The day following the surgery I told Connie, “It’s Thanksgiving day.” She looked up at the intravenous tubes. She was in the Intensive Care Unit for several weeks and was then moved to the Pediatrics Ward. Everyone in the family tried to think of things to amuse her during her hospital stay. One aunt brought in a little Christmas tree with ornaments. Connie’s recovery was slow and seemed to drag on forever. Suddenly, without warning, Connie developed a staff infection and was put in Isolation. My nerves were on edge as we zigzagged from recovery to crisis. Each time her father and I entered the Isolation room we put on surgical masks, gowns and gloves. A thoracic surgeon was assigned to her case and removed the fluid that had accumulated under her lung. I held her tightly as she sat up in the bed while the surgeon inserted a large needle into her back and drew out a pint of fluid. The pain she was in was excruciating. I will always remember the look of betrayal in her eyes during that procedure. She looked as if she hated me, and I felt like a monster. The doctor inserted chest tubes for drainage. The doctor came in every day and cleaned the wounds caused by the removal of the fluids, then he showed the nurse how to do it. It was a sickening sight and I came close to passing out watching them clean the deep wounds. It took all the courage I had to stay in that room. The worst part of this experience was seeing my child in such terrible pain and not being able to rescue her. I couldn’t just sit there. I paced her room in frustration. As time went by, my normally well-behaved daughter became depressed. Frustration turned to anger which showed up as she began to throw things at the nurses. This was indeed shocking behavior coming from her and I didn’t know how to handle it. The surgeon said, “The tumor on the adrenal gland caused the gland to pump out too much cortisone, (which had caused her face to swell). Her intense depression is caused by a withdrawal from the steroids that have been pumping into her system as a result of the syndrome.” Ted and I did everything we could to cheer her up. We talked about the automobile trip our family would take the next summer and about how much fun it would be. We even snuck in grandma’s famous spaghetti dish to encourage her to eat. Connie was in the hospital for three long months in various stages of recovery. Her suffering seemed endless; I began to wonder if she was going to live through this experience. I couldn’t stand the uncertainty. In desperation, and without an appointment, I drove to her thoracic surgeon’s office. I didn’t have to wait. He saw me immediately. “Will Connie live?” I asked him.