Jessie's Illness: An Essay by Cindy Bullens

On December 6, 1995, Jessie was admitted to the hospital after a chest x-ray found her lungs full of what looked to me like cotton balls. She had been sick all fall. We had taken her to the pediatrician five times over a two-and-a-half month period with various and worsening symptoms: low-grade fever, night sweats, lack of appetite and weight loss, extreme fatigue, and eventually back pain and coughing, only to be told that it must be some lingering virus. I demanded a blood test on a visit just before Thanksgiving. The results were that Jessie was "slightly anemic." We were incredulous, but put her on iron supplements. Two weeks later, when I was away on business for a few days, my husband Dan stood in the doctor's office and refused to leave until they found out what was wrong. Jessie was clearly extremely ill. That's when the doctor called for the chest x-ray.

At the hospital, we were whisked away to a special room by orderlies in gowns and masks. We were told that the doctors were taking precautions against what could be tuberculosis. The infectious disease doctors came pouring through the door of the tiny room sometimes as a group, sometimes one by one, poking, prodding, listening and looking at every part of Jessie's body. I felt somewhat relieved (albeit afraid) to be in the hospital. There is the built-in understanding that there is help here—as with the pediatrician. After some time in the emergency area, we were transferred to the pediatric floor. On the way up there, through the back "alleys" of the hospital, I hung back to ask one of the attending physicians if there was a possibility of cancer. She looked at me reassuringly and said that it was "way down on the list." I took a deep breath and caught up to Jessie and my husband.

For the next two days poor Jessie was stuck multiple times with every size needle one can imagine. She counted every one.

The pediatric oncologist showed up the second day "just in case." Jessie had two biopsies. One, a bone marrow biopsy—a long needle into her hip. One, under anesthesia, taking a piece of her lung. Jessie was an amazing child. When they came in and told us it was, indeed, cancer, she sighed and then declared that she was ready to do whatever it took to get rid of it.

"Let's get on with it," she demanded, "the sooner the better." Dan and I went into shock.

It was rare for a ten-year-old to have Hodgkin's but Jessie was a rare kid. The oncologists assured us that if it had to be cancer then this was the disease to have. It has a high rate of "cure"— over 80%. So we prepared for a nine-month course of chemotherapy and radiation.

The oncologist in charge of Jessie's case did tell us that everyone's cancer is unique, and that each person can respond differently to the same disease. We had no thought of anything but a full and total recovery.

And so 1996 started out with fear and trepidation, but also with great hope and belief. Jessie, Reid and I had planned to go to Key West for the school winter break a long time before she got sick. We kept our plans knowing that we might not be able to go. The day before the flight, Jessie's doctor gave her permission to make the trip. Her platelet (blood-clotting cells) count had been too far down for two weeks to start her second round of chemotherapy, so he figured she might as well go and have a good time.

She was ecstatic. We all were. So off we went to the warmth and sun of Florida. Our second night there we decided to rent a video. I took Jessie's hand (as I always did) to walk into the store and knew immediately that she had a fever. Fevers, when a child has cancer, are not good. During the lung biopsy, the surgeons implanted what's called a "central line" into Jessie's chest. A catheter goes directly in the heart allowing the doctors to give the chemotherapy and any other medications and take blood (which they do three times a week). Because it goes right into the heart, any infection can prove fatal. I took her temperature back at the condo. If it was over 102, I had to call her oncologist in Maine. It was.

The doctor at the hospital spoke with Jessie's doctor over the phone and thus started four straight nights at the hospital with an IV of heavy antibiotics and examinations all with the notion of finding and stopping some kind of infection.

The day after we arrived back home, Jessie, Dan and I were back at our own clinic for a full examination. By the end of the day the bad news came. The cancer had come back—in full force. In places it hadn't been before. A bone marrow transplant was the only chance. We sat in the doctor's office and heard all the down scaling percentages and that we were being sent to the University of Nebraska Medical Center, where they specialize in this type of transplant. We sat stunned. Once again shock and tears, horror and disbelief, but still there was hope.

On Tuesday, March 19, Jessie became really sick. She had a severe headache, was vomiting constantly, and was disoriented. Over the next forty-eight hours, she deteriorated markedly. The doctors did not have a clue what was causing these symptoms. It was terrifying to witness. Horrifying. I didn't leave the hospital. It was March 21, my birthday.

On that morning, I awoke in the bed beside Jessie scared to death. After the nurses' rounds, I leaned over her, kissed her on the cheek and whispered, "Guess whose birthday this is?" She had been hallucinating and mumbling inaudibly since the day before. "Yours," she said softly, "Happy Birthday, Mommy." Then Dan arrived, and we both sat on her bed. She seemed a little better. She asked if the cancer had gone to her brain. That was her biggest fear. No, we told her. Good, she said. We told her she had just been a little confused. "A LITTLE confused!" she said, rolling her eyes. Dan and I chuckled with relief. She then said she wanted to brush her teeth. Dan helped her to the bathroom, holding her tightly. She could barely walk. My heart was breaking. After she brushed her teeth, the nurse came in with a student nurse. She asked Dan and me if we would mind stepping out of the room for a few minutes while the student washed Jessie. I figured the nurse wanted to spare the student any scrutinization.

As we started to walk out of the room, Jessie sat straight up in bed and shouted, "Mom, where are you going?" We turned and walked back to her bed, both gently reassuring her that we would be right back. We kissed her, told her we loved her and left the room.

That was the last time I ever heard her voice.

She went into a convulsion minutes later and with what seemed like a hundred people working on her, was rushed to the intensive care unit. By the end of that day, we were told that she was going to die. There was no hope. No hope! Her brain was continually seizing even with the drugs. There was massive brain damage. Essentially, Jessie was already gone.

For the next thirty hours, a steady stream of friends and family entered that little room to say goodbye. It seemed like nobody ever left. Her teachers came, the principle of her school, her piano teacher. Her three best friends came. What a heart wrenching sight to watch eleven-year-old kids experience the dying presence of their playmate. It was crushing yet inspiring to witness how they touched Jessie, spoke to her, each with their own unique, personal farewell. Dan's brothers, my sisters, cousins, nieces and nephews came. My parents flew in from South Carolina. People came that we barely knew. The nurses kept politely asking everyone to move into the hall. One of the oncologists told us he had never seen such a visible outpouring of love. He was moved. Reid drifted in and out as she could stand it and announced around noon on Friday, after she had spent some time alone with Jessie, that her spirit had left her body. We believed her.

My brother arrived with his family from Arizona, where they were on vacation, at 1:30 am on Saturday. They were the last. After they had their time with Jessie, we called her oncologist and our social worker and asked them to come. Both of them had offered to be with us when the time came. Jessie's favorite nurse from pediatrics had been with us since her shift ended that evening. So there we were. We took her off life support at 2:30 am, Saturday, March 23, 1996.

There are no words to describe these moments. How do I find words to convey the feeling of witnessing a young vibrant body, the same one Dan and I so joyously witnessed being born, slowly giving way? How do I describe the smells and the sounds, the horrible sound of life leaving? Was she feeling anything? Thinking anything? What if she was? We took turns lying beside her on that narrow bed. We kissed her and stroked her and told her we loved her. I whispered in her ear that it was all right for her to go, secretly begging God to take me instead. I breathed her in as much as I could.

She died at 7:45 am.