Children of Dreams, An Adoption Memoir (13 page)

A few minutes later Laura arrived with her husband, Dr. Jay Lynch, an oncologist at Shands. They each gave me a hug. Their presence meant so much because I wasn’t sure I could go it alone. Jay left to discuss with the doctors what was on the scan. Laura handed me some clean, dry clothes and I discarded the ones that were soiled.

My world, as I had known it, had been turned completely on its head. One moment I had a happy, healthy seven year old daughter that I loved more than anything in the world. The next moment, I feared she might die.

A pediatric neurologist had been called in to meet with me and discuss Manisha’s case. Jay had returned.

“I want to do some research on something and I’ll be back a little later,” Jay said.

One of the nurses dripped something into her IV and walked out leaving me alone with her. Suddenly she started itching violently. I ran out of the room trying to grab someone’s attention.

“Please come help my daughter,” I cried. “Something is wrong. Please come now.”

One of the nurses ran in and stopped running the IV.

“What is in the IV?” One of the doctor’s asked.

“Dilantin.”

“She must be allergic to the Dilantin. We’ll have to use something else.”

After that, Manisha settled down and rested more comfortably. I was shaking and scared.

“Please God,” I cried, “Don’t let anything else happen.”

A short while later Dr. Kohrman, a pediatric neurologist, walked in. He was warm and engaging and his demeanor helped to put me at ease. He told me he had looked at the scans and wasn’t sure what was going on.

Dr. Kohrman performed a neurological evaluation on Manisha. About that time Dr. Lynch returned. He and Dr. Kohrman discussed Manisha’s scans in doctor lingo as I sat and listened.

Along with the neurological evaluation, Dr. Kohrman took a medical history. I told him how I had adopted Manisha when she was three from Nepal. She had chronic diarrhea when she arrived and had undergone testing to determine the cause, but nothing definitive ever showed up. It had eventually gone away with good nutrition.

She also had a stool sample with parasites, but they were never able to confirm what was there because the second stool sample was negative.

I came to appreciate how important the medical history was along with a medical examination. Both Dr. Lynch and Dr. Kohrman agreed they weren’t sure what it was, but considering Manisha’s background coming from a third world country, there was a possibility she had something called neurocysticerosis.

Anything that wasn’t cancer had to be a better diagnosis, I thought.

“What is that?” I asked.

Dr. Kohrman explained, “Neurocysticerosis is a parasitic infection of the nervous system. It is caused by the larvae of the tapeworm, Taenia solium, normally found in pork. When the larval cysts travel to the brain, either the invasion of the organism or the death of the organism can cause symptoms, oftentimes seizures.”

“Of course, we must be sure of what we’re dealing with,” he went on. “If it’s a brain tumor, she’ll need surgery. We will need to admit her so we can work her up.”

I had always found uncertainty difficult. To have my child have something serious and not know what it was caused me excruciating pain. Jay took me into a private room away from the bustle of the emergency area and gave me words of encouragement and prayed for Manisha. I was thankful to have a Christian doctor and friend interceding for us.

Around midnight we were admitted to a room on the ninth floor of Shands Teaching Hospital. The ninth floor had two wings. One wing was for pediatric transplant patients and the other one was for pediatric oncology. We were assigned a room on the oncology wing. It was a nice, private room with a private bathroom.

My good friend, Sylvia Murphy, arrived late that evening from being out of town and offered to stay the night with me. I was thankful not to have to spend the night alone. My mother would be arriving the next day.

Sylvia was plump and motherly with rosy cheeks, tiny feet, and graying hair. She would often share her wisdom of raising children with me and tell me all the things I never knew I needed to know. Having her own children late in life, she took motherhood seriously, and with a wry sense of humor she could make even the most stoic person laugh.

As soon as she arrived, she fluffed Manisha’s pillows and blankets, fixed her own bed, and within a few minutes, had turned the cold, white hospital room into a cozy abode of warmth and laughter.

Manisha flittered about the room basking in the attention bestowed on her from the nurses. She played with the buttons by her bed for the TV and the buttons that made the bed go up and down. Eventually she settled down and we turned the lights out. The nurses finished their chores and Sylvia quickly dozed off. I was left alone afraid and fearful. I twisted and turned unable to get comfortable; I dreaded the thought of waking up to face this nightmare.

I could hear the nurses laughing and talking outside the door at the nurses’ station. I wondered if I would ever laugh again. As I stared up at the ceiling lying on a makeshift bed from a chair, I heard the closest thing to God’s voice I have ever heard before or since.

The voice said, “Manisha will be okay. Lori, Manisha will be okay.”

It was said twice, and the second time it was preceded by my name. As much as I wanted to believe God was speaking to me, I was too afraid. Suppose it was just my own imagination or my own wishful thinking. Unfortunately I refused to believe. As a result, I suffered immensely more than God wanted me to, but God never forced Himself on me. If I chose to be miserable, He let me make that choice.

I was unable to fall asleep because of fear and God must have thought I needed something to lighten my heavy heart. Sylvia became very animated in her sleep and I was intrigued by her strange dream as I listened to her shoot up an enemy from a tree house.

“Shoot them up, shoot them up,” she kept saying. She went on for quite a while.

While Sylvia was fighting an army battalion, I was fighting a demon of fear. If only I could allow God to cast out my fears with his perfect love and make them as harmless as Sylvia’s crazy dream, God’s spirit of adoption would take hold and give me peace.

The next morning the hospital was buzzing with activity. Having been married to a resident at Shands in Radiation Oncology, I knew how things worked.

We met the attending physician who was accompanied by residents and students and other medical staff. Because the preliminary diagnosis was a brain tumor, Manisha was started on medication to prepare for possible surgery within a few days.

Dr. Mickle, a well-regarded pediatric neurosurgeon, stopped by. I knew him professionally having taken his deposition many times as a court reporter. Manisha would be in good hands if he did have to operate.

I asked two things of God in the first days of Manisha’s hospitalization which seemed virtually impossible. I asked God for Manisha not to have cancer, and I asked God that she would not require surgery.

I couldn’t bear the thought of her long, black, curly hair being shaved off and replaced with ugly stitches and scars. Memories of my dad’s brain tumor and surgery flooded my thoughts and consumed me with fear. A bright and intelligent man, my father died with the mind of a three year old.

Later that day, I decided to do some research. I called “Information” and got the phone number for the magazine Adoptive Families. I had remembered seeing in the magazine a blurb for the Minnesota Health Clinic for Adopted Children. The clinic advertised a specialization in needs of adopted children. I called and asked to speak to the physician who was in charge of the clinic.

“You need to contact Dr. Margaret Hostetter,” the woman on the phone answered, “but she’s no longer practicing here. She is now at Yale.”

They gave me her number and I called the Yale International Adoption Clinic. To my surprise, Dr. Hostetter answered the phone. I expected to reach her secretary.

I related Manisha’s story. She personally knew one of the Infectious Disease doctors at Shands and told me she would email him immediately about Manisha’s case. She wanted to get him involved in case it was neurocysticerosis. She also told me, “No matter
what the doctors want to do, don’t do surgery.” If it was neurocysticerosis, there was a possibility the surgery could spread the infection.

As I hung up the phone, I was awe struck at how God put me into contact with her so quickly. I learned later she was Professor and Chair of the Department of Pediatrics at Yale. Over the next year I came to know her as a special human being.

Throughout the hospital stay, friends stopped by and encouraged me. Manisha was excited to have so many visitors. The neurology nurse who had rescued us at the O’Connell Center paid us a visit. I found out her last name was Miracle. The folks at the O’Connell Center gave Manisha stuffed toys from The Wizard of Oz on Ice (I later threw them out; it was too painful to look at them). The hospital room was overflowing with flowers and gifts, some from total strangers, who became like family and made our stay in the hospital more enjoyable. My mother arrived the second day and stayed until a hurricane began churning off the Gulf.

That afternoon after talking with Dr. Hostetter, I was anxious for the attending physician to make his rounds. I wanted to relay the information she had given me, but I didn’t have to do that.

In the evening a distinguished, elderly doctor walked in who I came to know as Dr. Elia Ayoub, a professor emeritus in the Department of Pediatrics, Division of Immunology, Infectious Disease, and Allergy at the University of Florida.

Without introducing himself, he asked, “How do you know Dr. Hostetter?”

He was a kind, gentle man intrigued with Manisha’s case. Shands Teaching Hospital had not had a patient admitted with neurocysticercosis for years and few doctors had seen it personally. I am sure Manisha’s case had many doctors scratching their heads because doctors love “zebras.” I was glad they found Manisha’s case interesting, but I wished it weren’t my daughter.

Over the next several days many tests were done to come up with a differential diagnosis. She underwent a spinal tap, HIV testing, a thallium scan, tuberculosis test, chest X ray, blood work, EEG, and the most intimidating, an MRI. They began her on anticonvulsant therapy to prevent any more seizures.

One night they handed me some information to look over about seizures. “Manisha will need to take seizure medicine for at least two years.”

“Two years?” I repeated. The reality was only beginning to sink in that this was not a short term situation that would quickly go away. It was a defining moment. There would always be the before and after, and at least for the next two years, medical follow up would be a regular part of our lives. It was to become the norm and not the exception.

One evening a good friend of mine stopped by, Jim Norman, and I related to him that I wished I could get to a computer to learn more about neurocysticercosis. I hadn’t left the hospital since Manisha had been admitted.

“We could go to the University of Florida Medical Library and check out the Internet,” he suggested.

My mother took over baby sitting duties while Jim and I walked over there. His computer skills exceeded mine and he was able to get on the Internet. This was back in the days when few people even knew what it was.

I was intrigued by an article published by the American Society of Health System Pharmacists, Volume 5, March 15, 1998. The article was entitled, “Therapy Consultation: Albendazole versus Praziquantel for Neurocysticercosis,” by Sheila S. Mehta, Susan
Hatfield, Lois Jessen, and David Vogel. Jim was able to print it out and we took it back to the hospital to show Manisha’s doctors.

Despite all the tests that were performed, the doctors were no closer to a definitive diagnosis. The serum and CSF antibodies from the blood work and the spinal tap were negative for neurocysticerosis. The thallium scan was negative for cancer. The TB test was negative for tuberculosis. The HIV test was negative for AIDS. It became more a diagnosis through elimination than a diagnosis from a positive finding.

The Prednisone Manisha was prescribed to reduce the swelling in her brain increased her appetite and she went to great lengths to let us know we were starving her. She gained five pounds over the next few days and began to show the puffiness in her face typical for patients on Prednisone. I found the change in her appearance alarming but was reassured it was only temporary and would go away when the Prednisone was stopped.

The doctors scheduled her for an MRI with contrast, and when the day arrived, we took the elevator down nine floors and walked outside the hospital to an adjoining building where the MRI was housed. The MRI dwarfed the room it was in. Manisha was put on her back, given an I.V. in her left hand, and the attending pushed the gurney inside an enclosed tube. The machine turned on and several minutes were filled with loud, banging, repetitive noises as she remained motionless watching a television screen.

The procedure causes some people to become claustrophobic, but Manisha handled it like a trooper, better than I did. Relieved to have it over, the nurses took us back up to her hospital room. Now we had to wait for the results.

We spent nine days in the hospital after Manisha was rushed there in the ambulance that dreadful day. She got to eat all the ice cream she wanted. I pulled her around the hospital in the little red wagon reserved for the pediatric patients. We shopped in the hospital gift store for souvenirs. Nurses came by with colorful acrylic paints for her to paint her own ceiling square. The ceiling of the pediatric ward was covered with hundreds of squares that children had painted during their hospital stay. Therapists brought in dolls that needed doctoring of their boo boos. God blessed us with lots of friends and prayer warriors.