This is a story that begins with the ending.

I have been working on the Brandi Story for twenty-five years. I write a few pages, and then start over. I made up a kind of biographical essay that we gave to her teachers and guidance counselor at school.  Each time I handed out the latest updated revision, I made sure to tell them this was a work in progress. It kept changing, and I kept adding new parts.

I had hoped I would not live long enough for the book to be finished. Alas, that was not to be.  As Jesus is supposed to have said, as recorded in John 19:30:

 “It is finished.”

♥♥♥

A number of people have urged me to turn the Brandi Story into a book. The story below the fold is my attempt to begin the story, a chapter at a time. It will be an unusual book, in that it may not follow a normal timeline. There will be anecdotes, pictures and short stories.  Please follow me past the jump below to the story of a remarkable child who later became a remarkable young woman. A story of incredible odds, but incredible determination and bravery as well.

THE ENDING…

Brandi in her Hospice bed with Ruger, her best friend’s puppy.

One year ago on this date, May 25, 2015, I sat vigil with Brandi. She had spoken aloud for the last time, begging God to let her live.

About sunset, as I sat by her bed holding her hand, the heart monitor began to show skipped beats.  An occasional skipped beat is not alarming, but the pauses started to get longer. She also gasped for air, even though she was on oxygen.

I dialed her older brother, who was at work in Mississippi. I was in near panic, telling him, “I think it is beginning to happen.”

He asked if I had somebody with me. I didn’t. He told me to call some people we knew from church, who also knew Brandi well. The church organist loved Brandi, and she came up right away. They spoke the same language: Music.

Our friend Jim is an RN, and he too came to the hospital immediately. He sat down on the other side of Brandi’s bed and took her other hand.  He could see the monitor over my head, but I had to move and crane my neck to see it. He kept watching the monitor. He never said anything, but I could read his eyes and expression.

I talked to Brandi. She was obviously struggling hard, fighting to the end. She was heavily sedated, but I know that people under sedation, especially those near death, can often hear even if they cannot respond. Knowing this, I talked to her reassuring her as best I could.

As the skipped heartbeats got closer together, and the flat lines longer, I told her several times, “I love you. I won’t leave you. If you need to go, it is OK. I will be OK. Go ahead and go if you need to, and I will see you on the other side.”

After just a few more minutes, her brave Celtic heart quit. I could feel the pulse in her hand disappear. She continued to struggle to take another breath for a few seconds until she sighed, becoming still. Our RN friend watching the monitor looked at me and shook his head almost imperceptibly. He said, quietly, “We don’t need to tell them. They are monitoring her at the nurses’ station.”

I looked at the clock. It was 10:37 PM; Memorial Day, 2015.

Her sheet and hospital gown were in disarray. I asked, “Jim, could you cover her up. She needs to have some dignity.” He smoothed the sheet and tucked it under her chin and around her shoulders. Brandi looked as if she was merely asleep.

Two floor nurses came in with stethoscopes. They each listened to her chest and side of her neck. They made a note in the chart, and then left us to be alone with Brandi for a moment. The time they recorded was 10:45 PM.

Memorial Day, indeed.

IN THE BEGINNING…..

It was Thanksgiving weekend of 1989. Letha and I were having Sunday morning breakfast and reading the newspaper. She was reading the Lifestyle section. I think I may have been reading the comics.  She said, “Listen to this,” proceeding to read the weekly Sunday’s Child announcement.  Sunday’s Child was a weekly posting by the Mississippi Department of Human Services, describing children who needed adoptive parents. That week, the Sunday’s Child was an eight year old girl with a seizure disorder. We both knew it is very hard to place children with disabilities or chronic illness.

I responded, “Good luck with that.”

She continued reading aloud. There was a short two or three sentence paragraph at the end of the column, describing a, “…one-year-old white female child with cancer,” who needed foster parents willing to take her back and forth to the hospital for her chemotherapy treatments.

She said, “I’ll bet that is the baby Tim and Steve have been telling us about.” Tim was our son, and our friend Steve was a medical student. Both were doing clinical rotations at the University Medical Center.  For several weeks they had been talking about a beautiful little baby girl who had been abandoned at the UMC Children’s Cancer Clinic. “She is up there all alone with no one,” they said.

I think I replied, “Uh huh.”

Our oldest son was home for a long Thanksgiving weekend. He had to go back on Monday.  We went out to the airport and loaded the plane for the long trip from Jackson, MS to Kansas City, MO.  Early Monday morning we took off for the four hour flight.  Aside from headwinds and instrument weather, we got to Kansas City uneventfully.  This was 1989, a time when no one I knew had a cell phone. I called Letha from the pilot’s lounge pay phone with our running joke, “Cheated death again, we are here.”

There was a long pregnant pause. “Um,” she said.

“Uh, um…… you know that baby in the Sunday’s Child story?”

Having been married to this woman for thirty-three years, I braced myself for what I knew was coming next.

She blurted out hurriedly, “Her name is Brandi and we get her on Friday.”  I wasn’t prepared for THAT much next.

University of Mississippi Medical Center, Jackson, MS (the building with the rounded front in the foreground is the children’s hospital)

Letha told me she called the head of Social Work at the University Medical Center as soon as I was out of the driveway and out of sight. They were delighted to hear from Letha because of her unique qualifications. She had retired from her job as the Head Nurse for the oncology unit at one of the largest hospitals in Mississippi. She was well known in cancer care circles all over the state. The Chief of Social Work invited Letha to come out to the Medical Center to meet Brandi, and get paperwork started.

She got back home just in time to answer my phone call.

Having already resigned myself to the inevitable before she even finished talking, I told her I was worn out, and did not want to make a night flight back. I would spend the night, and come back on Tuesday.  When I got home, she had a long list of things for me to do. We had to take the bedroom furniture out of the spare bedroom and put it in storage, buy a crib, put that together, then get all kinds of baby supplies. We also had visits from various state officials to inspect our home. They even checked the smoke alarm and read the pressure and expiration date on the fire extinguisher in the kitchen. I finally got it all done by Thursday evening. Just in time.

The hospital social work department and the State Department of Human Services pushed two months of paperwork through the system in less than five days.

Friday morning. December 1, 1989. It was time. One of my purchases had been the best car seat we could find. After buckling the car seat in the back, we drove to the Children’s Cancer Clinic. We went up to Brandi’s floor and I saw her for the first time. My reaction was shock.

Brandi looked just like one of the baby monkeys in Dr. Harry Harlow’s studies of anaclitic depression in babies. Abandoned by her birth parents, her world for almost half her short life had been a stainless steel crib on the children’s cancer ward, getting chemotherapy from the time the cancer was first discovered until the day I first saw her.

Only thirteen months old, alone in that sterile ward, in a stainless steel crib, undergoing chemotherapy, and with almost no human contact other than what was medically necessary . . . for five months!

It was not the fault of the nursing or medical staff. They did what they could, but at the same time had a whole building full of sick babies and children to take care of, many of them terminal. Hospital staff took up a collection to buy her a walker so she could get out of the crib. However, they had to tie the walker to the leg of the crib so she could not get in the way of foot traffic or get hurt.

The Social Worker sat down with us and told the story of how Brandi had come to be in the Clinic.

Brandi’s birth parents were in their mid-twenties.  The home in southern Mississippi had been under observation by Human Services for some time. In July 1989, one of the social workers dropped by their mobile home to check on the children.  During the visit, she realized seven-month-old Brandi needed a diaper change.

When the social worker removed the old piece of filthy towel that was Brandi’s diaper, she saw that the baby’s anus was deformed badly.  Suspecting sexual abuse, the social worker bundled her up, telling her birth mother, “This baby has been abused, let’s go.”

Taking the mother with her, the social worker rushed Brandi to the local hospital emergency room.  On the way, Brandi had two seizures.  This made the social worker even more convinced that Brandi had been abused.  When they got to the County Hospital, the emergency room physician discovered a mass in her rectum, which appeared to be a tumor.  He advised the DHS social worker to rush Brandi to the University of Mississippi Medical Center.  UMC has a major pediatric service.  Brandi had two more seizures on the way to Jackson.

The social worker made the 90 mile drive in record time.

On examination at UMC, a large tumor was diagnosed.  It involved her lower spine, rectum, and buttocks.  It was so large, it was cutting off her ability to urinate and have a bowel movement.  The doctors concluded the tumor was causing the seizures.  Unable to void, she was toxic with body waste.

The timing of the social worker making the house call was nothing less than miraculous.  In fact, if her diaper had not been changed, Brandi would have died.  At the time the social worker noticed the baby needed to be changed, Brandi had only hours to live.  Because she could not void either her bowels or bladder, Brandi had become increasingly toxic on her own body waste. She could not have lived more than one or two more days.

Dr. Richard Miller

Surgery was scheduled immediately with Dr. Richard Miller, a pediatric surgeon highly regarded for his outstanding skill.  Brandi’s birth parents objected to the surgery, saying that they did not have the time to stay in Jackson for any such procedure, in spite of the fact they were told she would die without the surgery.

The attending doctor asked if their objection to medical intervention was due to religious reasons. “No, we ain’t got time to mess with none of that stuff. We got to be at work.”

The physician turned to a nurse, “Call security and call social work.”

Since the objection was not due to religious convictions, the Social Work Department took custody of Brandi on the spot and authorized the surgery as a medical emergency.  Dr. Miller debulked the tumor.  He did not get it all, but reduced it in size enough that she could void.  It was diagnosed as an endodermal sinus tumor, which means that it was located between the base of her spine and her rectum, protruding into the abdominal cavity. The biopsy showed that it was a malignant Teratoma, a particularly deadly form of cancer.  Teras is a Greek word that means, “Monster.”

Her father and mother were told that due the fact that Brandi’s tumor was highly malignant cancer, she would require chemotherapy.  Her parents told the hospital staff that this was unacceptable to them, because, “We have got to get home, we can’t stay up here for none of that mess.”

Once again, the hospital social worker intervened, and the State Department of Human Services took court-ordered custody on the grounds of medical neglect.  Treatment proceeded as a medical emergency.  The parents went home aft­er staying only a day or two.  The grandmother stayed about a week, and then she too went home.

Brandi’s birth parents came to see her three times in the following five-month period.  Two of those times were only because the Social Worker from DHS picked them up and drove them to the hospital in her own car.  On neither of those occasions did the birth mother offer to pick Brandi up from the crib.  She sat by Brandi’s crib and rocked.  Nursing staff and the State social worker noted that the mother kept referring to Brandi as “it.”

“It looks like its hurting.”

“It may be hungry.”

The third visit came when the rock group Bon Jovi was in town, and they stopped by for a few minutes on their way to the concert.  Nursing staff recorded that visit at ten minutes.  The parents expressed concern they would be late for the concert.

At the time we got her, she was a hollow-eyed, bald-headed waif in a classic textbook anaclitic depression due to lack of nurturing.  Her projected life expectancy was between five and eighteen months.  Based on her appearance, that unhappy assessment seemed realistic.

GOING HOME:

I picked Brandi up for the first time. She immediately latched onto my neck and held on..

She also grabbed me by the heart and never let go.

She did not even have any clothes to go outside. The only clothing she had was a couple of flimsy baby nighties that were less substantial than a t-shirt. It was early December; the day was cloudy and cold. Letha had the foresight to bring new warm baby clothes for her to wear.

We got to the car, and I had to unlatch her clutching little hands from my neck. She was not talking, or walking.  She pointed at things of interest and made a grunting noise. She only let go of me with one hand at a time. The other hand always maintained a grip on my neck.

Brandi in the car seat for the first time. Chemotherapy had made her bald, and the massive amount of steroids she received caused her cheeks to be puffy. The round cheeks stayed with her the rest of her life.

We got to the car, and I tried to put her into the car seat. As I unlatched her tiny hands from my collar, so I could put her in the car seat, she had a look of abject terror. Trying to reassure her I was not leaving her, I made a promise that as a foster parent, I had no legal right to make, but did anyway. I told her I would never leave her.  When she finally stopped crying, Letha and I buckled her into the car seat and we headed home.

I discovered I could use the flip lever on the rear view mirror to turn it down so I could keep eye contact with those enormous pale blue eyes. She seemed to feel more secure when she knew I was looking at her. As for me, I found myself falling in love with this hollow-eyed, tiny pale waif with no hair.

By the time we got home there was a new Daddy’s Girl in town.

TO BE CONTINUED. . .