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 c