Part 8 (1/2)

”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 G.o.d 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 ent.i.tled, ”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 appet.i.te 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 rea.s.sured 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, repet.i.tive 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. G.o.d blessed us with lots of friends and prayer warriors.

One night Sylvia came by to drop off my mail. In the mail were more pictures of our referral from Vietnam. I opened it up with mixed feelings. I hope I am not replacing Manisha with this baby if she dies, I thought. It disturbed me. My feelings were as raw as a piece of uncooked meat. I knew G.o.d was in control but I had not surrendered my anxieties to the Great Physician and Healer.

Using the protocol that Jim and I found on the Internet, the doctors started Manisha on Albendazole treatment and waited along with us for the results of the MRI. Surgery for the time being was cancelled. G.o.d had answered my first prayer!

The MRI results came back as inconclusive. The doctors discharged Manisha and asked me to bring her back in a month for a CAT scan with contrast.

Happy to be discharged, the real battle had just begun. Joyce Meyer wrote a book called Battlefield of the Mind. The image in the t.i.tle says it all as I was battling dragons and fears that stole every ounce of joy from my life. I was terrified of another seizure. Insecurity as a single mother sapped all my energy for living and made life overwhelming. The Prednisone Manisha took to reduce swelling created a feeling of isolation because it lowered her resistance to illness and we went through several bouts of unexplained fevers. Fevers increase the risk of seizures.

I was fearful for her to be around other kids that she might catch something. The Depakote they gave her for seizure control made her sleep all the time and she was difficult to arouse. The doctors switched her to Tegretol. Tegretol can cause liver damage so she had to have routine blood testing. I was afraid she would be one of the few to have a serious reaction.

By far the hardest thing to give to G.o.d was the ”not knowing.” Were we giving Manisha the right treatment? If she had a brain tumor, by not doing surgery or giving her chemo, was it growing and could she mentally become like my dad? One morning when we were in the hospital, the chief resident in neurology gave me his opinion of what she had. He called it stage two astrocytoma. I dismissed it thinking what does he know? Not even the attendings would say, but it still upset me.

Well meaning friends came to me in the next few weeks and remarked, ”I didn't even recognize Manisha. She looks so different.” The comments hurt. One night we went to church and some of the kids were smirking and talking in whispers about her appearance. I was worried that Manisha would overhear and be too embarra.s.sed to go back to church. I snuck up behind every one of them and whispered that it was because of the medicine she was taking and not to talk about it.

One evening I dropped Manisha off at church for the Sunday evening service and drove to my prayer group that was meeting in someone's home. I received a call a few minutes later that Manisha laid her head on the desk and fell asleep. I was worried she had a seizure. Could the tumor (if that's what it was) be growing? Every time she had a headache it sent me into a tailspin. The doctors finally told me it was okay for Manisha to have headaches.

Every little thing made me worry. If she was hyperactive on a particular day, I wondered if there was increased pressure in her brain and if it could cause brain damage. I was afraid to let her out of my sight in case something happened. Suppose she went swimming with some friends and had a seizure? Manisha's seizures were not pet.i.t mal seizures; they were long and protracted, partial complex seizures, requiring immediate care.

The steroids made her mean and difficult to parent. I didn't want to discipline her when she was already going through so much-with all the IVs, multiple blood draws, the long hospitalization, and the change in her appearance-how could I? And what if she died? I didn't want to remember disciplining her.

One afternoon we went for a walk and Manisha rode her bike. As we headed back to the house her breathing was labored. We paused to give her a chance to catch her breath. I worried that her weight gain was putting too much stress on her heart. She developed asthma-like symptoms and I contacted a pulmonologist to have her checked. We returned to Shands for a full pulmonary workup. It eventually went away on its own.

One night we were sitting in the pew at church and I glanced down at her and noticed a bulge on her neck. I panicked and quickly took her to the restroom. I ma.s.saged her neck and found a swollen lymph node. Two things came to mind-cat scratch fever or cancer. Our cat gave her a good scratch a couple of weeks earlier. I hoped that was all it was.

We made several trips to the doctor until it was finally decided we didn't need to biopsy it. I worried over it for too long. Manisha would kink her neck in rebellion every time I wanted to check it.

One weekend I had the grand idea to spend a couple of nights at the beach on a campout. I bought all sorts of treats and goodies and stacked them up in the living room.

The next morning Manisha woke me up.

”My neck hurts,” she said.

I took her temperature and she had a fever. I quickly dressed her and took her to the emergency room fearing she had meningitis. She didn't; so much for a weekend camp-out. Many fun activities were sabotaged. I gave up trying to have any.

My fear paralyzed me and depression consumed me. My emotional state made me feel like a failure as a Christian. Prayer and reading the Bible were both difficult. There was no joy in either and my guilt over it compounded my feelings of isolation and defeatism. I resigned myself to being a joyless Christian and hoped no one knew how I felt deep down inside.

There was only one verse out of the Bible that quieted my anxious spirit. I would say it over and over to myself. It was the only verse that gave me peace. ”Cast all your anxiety on Him because He cares for you” (I Peter 5:7).

A month later we returned to Shands for the CAT scan with contrast. It showed a good result so the doctors felt like we were on the right track.

However, in November, Manisha woke up one morning with a sore throat and began running a fever. I took her to her pediatrician. The nurse took a swab for strep throat and left the room, leaving us for a few minutes. As we were waiting Manisha had a seizure. I ran out of the room in a panic yelling for her doctor to come quickly. He hurried in and Manisha acted fine, but I knew she had one. He didn't believe me.

He performed a couple of breath-holding tests to see if she would have another one. She didn't. He left the room again to check the results of the throat test. Manisha seized again. I ran out and yelled for him to come. He walked back in and saw it for himself.

The nurse called Shands to consult with her pediatric neurologist. Dr. Kohrman wanted Manisha admitted back into the hospital for observation. The nurse got an ambulance and we rushed her to Shands.

This time Manisha was admitted to the pediatric floor and was in a room with three other children. I spent the night down the hall attempting to sleep on some chairs in the waiting area. All night I recited every Bible verse I could remember from memory. My anxious heart deprived me of sleep. The following day it was discovered her Tegretol level was too low.

”We need to double her dosage,” the doctor told me, ”and we will recheck her level in a month.”

Her doctor also recommended another MRI to see how things looked. After a one-night stay in the hospital, Shands discharged Manisha with a return date the following week for another MRI.

The results of the MRI were devastating.