Our Story
Tracey's Story Cont.
For several days, Tracey’s eyes were puffy upon waking up in the morning. She was very cranky after she woke up from naps in the afternoon. She was not herself. One morning Andy went into her room to get her, and I called out to him, “How does she look?” In typically male fashion, he responded that she looked fine. When he carried her downstairs, where I was preparing breakfast, I turned around and burst into tears. That beautiful little face I was expecting to see looked “frog-like.” I know that sounds like a terrible description, but it’s really what I thought at the time.
We went back to the doctor. This time he suggested that perhaps we should take a look at her urine. In less than 10 minutes, he sat me down and explained that we needed to go to the hospital. He was very calm but firm. I had no idea she would be spending the next six weeks at Bryn Mawr Hospital. On some level I was relieved that we were going to get some help.
Tracey took the hospital by storm. It was hard for Andy and me to see such desperately sick children come and go while Tracey languished in the hospital. In those six weeks she went through countless coloring books, learned to ride her tricycle and became the “mascot” of the floor (the nurses adored her and she often enjoyed coffee break with them in the nurses’ lounge). Lots of tests were needed and we monitored her weight, took her temperature and measured her fluid intake and her urine output. She was not eating well, and nor were we.
While I spent all day and every day in Pediatrics with Tracey, Andy worked and arrived at about 6 p.m. with only a milkshake, which Tracey had “commandeered.” He spent hours crayoning with her. Andy lost weight, too! One day during nap time, when I went home for a few hours, I threw myself across the bed and sobbed inconsolably for quite a while. Andy was worried and came home to see me. One look and he announced, “You’re pregnant”…and he was right. While we had been hoping for a year to have another baby, this was surely not the best time (or so we thought). Concurrent with being pregnant I was much more temperamental and always sleepy. Often, I climbed into Tracey’s crib and fell asleep.
After a month of this routine, I began to question why we were spending so much time at the hospital. Not much was changing. At my mother’s suggestion we went to Children’s Hospital of Philadelphia (CHOP) and met with Drs. Cornfeld and Schwartz, locally recognized as the experts on Nephrology. After reviewing Tracey’s records and examining her, they told us that she had Nephrotic Syndrome. Because this was a childhood illness, if she could cope for the next five years, she should be just fine. Once they learned that we were expecting another baby, they assured us that while it has happened that two children in a family could have the Nephrotic Syndrome, there was no evidence that there was any basis in heredity.
We wondered if we should have Tracey treated at CHOP, but they assured us that while “styles” of treatment might differ somewhat (CHOP treated nephrosis far more aggressively), Dr. Troncelliti was doing a fine job, and was far more accommodating to us considering our constant visits. They were a bit curious as to why she had been in the hospital for six weeks, since normally Nephrotic Syndrome is treated on an outpatient basis. We were curious too, and elated at the prospect that we might soon go home. Dr. Cornfeld said he would confer with Dr. Troncelliti and get back to me. They called back shortly and told me that apparently Dr. Troncelliti felt that I was a highly “volatile” young lady. Tracey’s interests would be best served by keeping her at the hospital, they said, where they could closely monitor her progress with steroids.
Highly volatile? Highly volatile? If you wanted to see highly volatile you should have seen me THAT day!!! In the final analysis, Dr. Troncelliti was right. When we finally returned home two weeks later it suddenly dawned on me that the entire responsibility landed squarely on my shoulders. I was terrified. Each day I took her temperature, weighed her, tested her urine, and watched her behavior and her appearance for signs of trouble. I also made quite sure she was safe from exposure to germs of any kind (within anyone’s ability to do so).
I called Dr. Troncelliti each and every day that year, including on Christmas and New Year’s. He was gracious and responded to me when I said, “Sorry to bother you…” that I was surely not bothering him. He said that every single time I called him. What a great man. Over the course of the next few years he confided in me that he felt he could help Tracey through the illness part, but that he was most interested in helping her remain “whole” and not ever view herself as a sick person.
Then Drew was born, the beautiful baby boy we had so wished for to complete our family. Tracey had yet another stomach virus and lay in our bed twirling her hair as I tried to explain why I would have to leave her for a week. Dear Aunt Margaret (her favorite aunt) came to take care of Tracey, and off we went to Bryn Mawr Hospital. When we returned, I was horrified to see “Little Lotta” come down the stairs to greet me and the new baby. I had made arrangements for the caretakers (family members) to test her urine and report to me, and if Tracey had needed steroids they would be administered.
As I saw Dr. Troncelliti in the hospital every day, I reported to him what had been relayed to me. I happen to have one of the most wonderful families ever. But in an effort to keep me calm they said all was well when it wasn’t. I came home to find Tracey in rough shape and on the steroids she went. I believe that is why I suffered the “baby blues.” I often went into Drew’s room, gazed into the bassinet and felt so sorry for him to arrive at such a difficult time- during the dismal winter. Tracey was sick. We were crushed. I think I cried for about three days until I saw the effect it was having on my loved ones, on my mother’s face.
I heard her down in the kitchen preparing dinner with my husband- whispering, worrying about me. When dinner was ready she arrived in my bedroom with a tray complete with a “Happy Face” plate, cup and a daisy with a happy face drawn on it with ink. I burst out laughing since it was such a wonderful and extraordinary attempt to cheer me up. It worked. In the final analysis, Drew has been one of the best things that ever happened to all of us. He keeps us focused on the positive and keeps us laughing always!
That spring we appeared on a TV show with our friends across the street, “Dialing for Dollars.” Tracey’s tummy was a bit distended and she didn’t seem to feel too well, but we were scheduled for a check-up with Dr. Troncelliti the very next day. As she lay on the sofa twirling her hair and watching us on TV the next day, she said, “Mommy, I don’t feel good.” These were five words that were definitely overused in those years. I told her we had an appointment for a check-up with the doctor and that she needed to eat her breakfast (which she declined). I told her to go upstairs and get dressed while I fed the baby and prepared hurriedly to go. She called down to me that she couldn’t really walk. I responded that I couldn’t carry the baby and her as well and that she needed to hurry up!
We arrived at Dr. Troncelliti’s and he came out into the waiting room. He took one look at Tracey, lifted her into his arms and carried her to the examining room, where he asked me about her appetite (which was not good). He asked me if she was able to walk by herself (which she did not wish to do). He showed me about “muscle guarding,” which is an indication of appendicitis or peritonitis. She had a fever. My friend and neighbor Fran, with whom we had attended “Dialing for Dollars,” happened to be in the office, too, for a regular check-up for one of her children. When I appeared back in the waiting room with tears in my eyes, she opened her arms for baby Drew and gave me her stroller for Tracey’s use. We went right across the street to the hospital, where it took an interminable time to check her in. We called Andy, and by the time he got there she was in Pediatrics with a very high fever (103 degrees) and was very listless.
The surgeon, Dr. Dieter Peltz, spoke with us just prior to going into surgery, telling us that he hoped that her appendix had not ruptured. Had that happened we would have been in even more trouble than we were- and we were in considerable trouble. For the hour or so that it took to operate, I turned into what could be described as a wild animal. I couldn’t sit. I couldn’t accept the warm arms of Andy. All I could think about was the possibility of losing that adorable child.
When Dr. Peltz finally arrived in the “green room,” he felt the news was good. While her appendix had not erupted, he explained that it was inflamed and had to be removed. While it had not burst it seemed to become inflamed as a result of the fluid in Tracey’s abdomen. She had peritonitis and required huge doses of antibiotics and steroids. Her friends, the nurses in Pediatrics, gave Tracey all of the love and attention anyone could ask for. I called Dr. Schwartz at CHOP and told him what had transpired. He said (and I quote), “Now, we are in the big leagues. Bring her down here right away!” Those were terrifying words.
An ambulance took me and Tracey to the new Children’s Hospital (which at the time was about two weeks old). They ran out of clean sheets. The phones were messed up. There was generally a lot of chaos, but we were grateful to be there. They loaded her with steroids. Her incision opened after 11 days (a side-effect of steroid use) and they “glued” her back together. One thing to know about CHOP is that if you are really sick, you need to go there and they will attack the problem with a vengeance. The moment it appears as if you are going to live, they send you home- and so it was with Tracey. She weighed just 28 pounds and was quite frightened. She had been swollen prior to all of this drama, and here she was frail and fragile. Her legs had atrophied.
When Tracey was well enough to go outside and play she was now cushionoid, a side-effect of the steroids, but her legs were still so skinny. I cried when I watched her in her shorts, halter top and pony tail, clutching a bag of candy her grandmother had provided- looking for her friends. She called to Michael, Fran’s son, across the street, but couldn’t negotiate the curb as her muscles were in need of exercise. It didn’t take long, though, and in a few weeks we were back in business. So much for THAT summer.
We were fortunate to live in a supportive neighborhood. We had lots of friends who were enormously sympathetic and helpful. Tracey’s best friend, Jenny, was by her side all the way. In those days, Jenny wore a “happy face” sweatshirt, and with her twinkling bright blue eyes and infectious giggle, she was just what we all needed. She has stood by Tracey’s side in any crisis in her life, and does to this day!
Fast forward: Clarke was born. While we were not anticipating another child, he has always been such a delight and probably caused a change in my attitude towards Tracey’s illness. I could no longer obsess. I was too busy, and had to allow Tracey more freedom and autonomy. It was good.
We moved, and Tracey went to a school that was three times as large as the one she had previously attended. She was stunned. One day she returned from school elated that she had met a friend who also had a disease and needed to test her urine. This friend had a little brother, David, who was in Drew’s class and they liked to play together. I called David’s mother to introduce myself, and tell her what Tracey had said. When I asked her what her daughter Elizabeth had, she told me Cystic Fibrosis.
While Tracey might improve with time, Elizabeth would deteriorate. They were friends for years, and Elizabeth was a real trooper. She died at age 19 after having gone through many horrible bouts of illness. We will never forget her.
After yet another particularly bad episode of swelling, she was just getting back to normal when she mentioned she thought Clarke might have chicken pox.
Chicken pox. We had run in fear of those two words for years. We understood that getting the chicken pox on steroids could be devastating. We notified everyone and even the school to let us know when chicken pox was contracted by anyone. In spite of all that, it came. Scary times.
Clarke had one mark on his belly that became dozens of marks all over and a high fever. He was only about three and suffered a serious case. Dr. Troncelliti took Tracey off the steroids immediately and we waited. Exactly 21 days later she came down with the disease and had what Dr. Troncelliti said was the worst case he had ever seen. She had chicken pox everywhere. We had to cover her hands at night so that she wouldn’t pick off the scabs, but even with those precautions she has a few tiny pock marks on her forehead. I think we dodged a bullet.
By the time she was 12 she was dependent upon the steroids. Those were the days of going to dancing class. It was painful to see her so distressed about being cushionoid and not feeling happy with her appearance. Thus, we took a trip back to CHOP and the conference with Dr. Schwartz.
Dr. Schwartz carefully laid out the options with both Tracey and me. Tracey was, at that point, really done with all of it so any solution that he could offer she would find totally acceptable. The possibility was to take Cytoxan (which is the same drug I used years later to cure breast cancer). She would lose some hair. Her white count would be reduced and if it hit a certain level, the protocol would need to stop until it rose again. She could end up sterile, which happened more often to boys than to girls.
Knowing Tracey’s feelings on the subject, I jumped in with my opinion that we would go for it. But the doctor stopped me in my tracks, saying it was not my call. Tracey immediately said “Where do I sign?” She had had it and was willing to try anything and everything.
I recall that the Cytoxan protocol was a six-week program and Tracey did quite well except for my nervousness about her catching my bronchitis, since her immune system was being compromised by the drug. We stuck with it. Then her white count dipped below the allowable number but still Dr. Schwartz told us to stay the course. Tracey had to have her blood tested twice a week, and her friend Jenny accompanied her each time. She lost some hair…but luckily it was during baseball season and she had a cap to wear!
Miraculously, it seemed to work! What a new world it was for us- for Tracey to get a cold and not spill protein. She had at least four great years with very little to worry about, other than her being a teenager: cars, boys, alcohol, parties when parents weren’t home, etc.
I recall once she cut her heel and began to spill protein. She had to go on steroids briefly (and was disappointed about that), but otherwise life was smooth.
Off she went to college in Roanoke, Virginia- seven hours by car. We worried about her, of course, but I think she must have loved the independence and relative freedom from concerns about her health. During freshman year she contracted Mononucleosis but stayed on at Roanoke and even got into the sorority of her choice through it all.
She had a boyfriend, Richard Lea, and dated him for several years. The year before they graduated they were to go to his family’s vacation home in Taos, New Mexico. Just before they left from our house Tracey had an episode, which began with the stomach upset and landed her in the hospital. Her blood pressure dropped suddenly and she fainted. She was spilling protein and began a run on steroids, but off they went. Richard promised to take very good care of our Tracey, and he kept his word. She had a great time.
Several years later I was diagnosed with Breast Cancer- a story for another day! After all of my therapies and when my hair had just begun to grow back, I got a call from Children’s Hospital of Philadelphia asking me about Tracey and her health. They were following up with patients who had undergone long runs of steroid use, as it seemed there was some evidence that bone deterioration was a possible side effect. They requested that Tracey undergo some bone density studies, which she was glad to do. When the results came back it surprised us all to find that her bones were at least as strong as the young technician who did the test! Her bones were excellent. I attribute that to some good luck and also to the fact that, having been sick as she was, she makes it her business to take her good health seriously. She runs, watches her diet, gets plenty of sleep and doesn’t drink or smoke. Her goal was to feel as well as she could, given her circumstances, and I believe she reached it!
At that time, they asked her if she would have any interest in speaking at Children’s Hospital to a group of anxious parents of children with Nephrotic Syndrome. She was happy to do so.
I don’t believe I have ever been more proud of her at any other moment in her life as I was that night. She was glorious. She never looked prettier with her blonde hair and sparkling blue eyes. She wore a white wool suit jacket, trimmed in black with a black straight skirt. Heads turned as she strode into the conference. People were eager to ask her about her experience and mostly they were relieved to meet someone who had gone through all that they had. She spoke thoughtfully and intelligently. She answered questions and made her mother very proud! I could see almost visible proof that she was doing them all good! It was doing her good, too!
It may be that on one or more occasions she spilled protein in her urine and didn’t mention it to me. But it seemed that this disease had become a thing of her past.
When she married Bobby they had a child right away, which could not have thrilled me more as I was girding myself for difficulties in that area. Her pregnancy went smoothly and in another year and a half she had Savannah Jane. And next came Lindsay Christine!
They are not planning to have any more children, but they do have a new puppy named Jake!
Tracey and Bobby live a very happy, active life. Their children have been very healthy and a source of much joy for me and Andy.
As I read the information that NephCure shared with me, I feel very much connected to the stories of other children with similar problems. It makes me want, more than ever, to be of some help to them and their parents through Tracey. If we could just find out the cause of the Nephrotic Syndrome or the cure for it we would be ecstatic. For now, it is enough to touch the hearts of those currently suffering.
What I can say for sure is that while I knew that I had the cutest little girl in the whole wide world, I am now thrilled to realize that I am the mother of a healthy, courageous, and caring grown woman who has supplied us with fantastic grandchildren. I know that she is going to use her experiences, talents and abilities to “pay it forward” in an effort to thank all of those who helped her through this difficult and lonely journey. It is her turn and she is proud to meet the challenge!