Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 1
Spring 2002
(one week before diagnosis)
The First Week of Pain
On Sunday, March 17th, St. Patrick’s Day 2002, Kami woke up with a backache. It must have been because she slept in the crack between the two beds or something. We all thought it would go away in a few days. She was fine the day before at gymnastics. I remember vividly what Kami looked like that Saturday, the day before, at gymnastics. She was so cute in her purple leotard. She was so athletic and full of energy. She was jumping around everywhere and feeling great.
At preschool the next day, Monday the 18th, I talked to Kami’s teacher, Margo, about how Kami was making up lots of stories lately. Margo assured me that was typical five year old behavior. Margo told me Kami took a nap that day and slept soundly. That week, Kami kept waking up a few times every night complaining that her back hurt. I brought her in to sleep with me in the master bed, while Francois slept with Gina and Duke in the girls’ room. After a few nights of this, I was getting exhausted and wasn’t functioning at my best. Kami was taking naps at preschool. I thought she couldn’t sleep at night because she was taking naps during the day. I had no idea something was wrong.
By Thursday, Kami’s teacher Margo said, "At least she is being consistent and saying it's her upper back that hurts." After Margo said that to me, I started wondering if there was something wrong. That Thursday Kami kept bugging me to call the doctor. I didn’t understand how a perfectly healthy five year old girl would want to go to the doctor for a backache. Because she was so insistent, I called. Our regular doctor was not there on Friday so we had to wait until Monday to see her. To Kami that seemed like a long time to wait, but she really wanted to see our regular doctor. I made an appointment with Dr. Soumekh for Monday.
Seeing the Doctors for the First Time and the First MRI
On Monday, March 25th, we went to see Dr. Soumekh. We told her our story and she was very concerned, especially about the nighttime waking. She very quietly said, "You need to get an MRI tomorrow." She went out and made the appointment for us. From what I have read on the Internet since then, that was a miracle. Usually with these cases, which are extremely rare, doctors have no idea what the symptoms can mean and usually these cases go undiagnosed for a long time.
MRI, MRI, what was that? We had no idea what lay ahead of us. On Wednesday, March 27th, I took Kami in for an MRI. Somehow Kami knew how important this was. She lay down completely still in the very loud, very narrow MRI tube for over an hour.
Dr. Soumekh called the next morning and asked for Francois and me to come in right away. I hung up and broke down crying, I realized something was very wrong. I called Francois and he came home from work right away. It was Thursday of the kids’ spring break so they were all home. We all went over to the clinic and the kids played in the waiting room while we went in to talk to Dr. Soumekh. She told us Kami had a growth inside her spinal cord. Shock! What was that?! When she told us, Francois broke down crying. How could something like this possibly happen? Dr. Soumekh sent us over immediately to talk to a neurosurgeon at a specialty hospital in town.
The neurosurgeon examined Kami and told us she would need to have spinal cord surgery as soon as possible, either next week or the week after. Total Shock!! Kami seemed fine except she kept waking up at night in pain. We were being told she needed spinal cord surgery next week! The risks of this surgery, we were told, were that her spinal cord could be damaged and she could be paralyzed from her chest down. No way were we going to do surgery!!! We were told that her condition was so rare that not many surgeons performed this surgery. This neurosurgeon performed about one a year. There was another surgeon in the state who performed them less frequently. There was a surgeon named Dr. Epstein in New York who performed them frequently, but he had just been in an accident and wasn’t able to perform surgery anymore.
It was difficult to arrange a time for this surgery because they had to coordinate it with certain monitoring equipment. They needed this monitoring equipment to monitor both sensor and motor nerves of the spinal cord. If the spinal cord was getting damaged, the equipment would tell the surgeon when to stop. We were sent away and told to wait until Monday to hear when Kami’s surgery date would be scheduled.
Waiting to Hear About the Surgery Date
Cynthia came over that night like she always did just when we needed her. She was amazed at how calm we were. Actually, we had been crying all day already. We were in shock. We felt numb. Having Cynthia come over brought up the fact that we had to tell people. I was worried about how and what I was going to say. Cynthia gave me some very good advice. She said I had the privilege not to tell people if I didn't want to. That lifted a big weight off my shoulders. I didn’t have to tell everybody right away. I did, however, have to call and tell my extended family.
I had been very busy that school year. I had a full time job and three young children. One thing I consciously tried to cut out of my lifestyle was talking on the phone. I realized it took up a lot of my time and even though it was something I enjoyed, I felt in the long run, my life went much smoother if I stuck to my responsibilities and didn't talk on the phone very much. It was a difficult thing to give up. My best friend Gonne said I must have been preparing myself for something.
I called my family who all happened to be together for spring break. What terrible news I had to give them. The most ironic part was that just the year before, my sister's husband, Patrick, had been in a motorcycle accident and injured his spine and was paralyzed from the chest down. This was Patrick’s first trip to where my parents lived since his accident. It bothered me very much that something so horrible and so similar happened to both Patrick and Kami. It was so strange that Kami first woke up in pain on St. Patrick’s Day. I can't even imagine how that phone call telling my family our news about Kami affected them. It was extremely painful for me.
The next person I had to call was Gonne. She had me bring the kids over to her house the next day. The kids had a lot of fun over there. Gonne had somehow already researched the Internet for other doctors and found the hospital in New York where Dr. Epstien was. I had not told Gonne we had heard about Dr. Epstein. She had found him on her own on the Internet. Dr Epstein was famous world wide for his work on spinal cord tumors. I told Gonne about Dr. Epstein’s accident. She encouraged me to look into his program anyway. There might be other doctors there who had trained with him. That was a brilliant idea. I hadn’t thought of that.
Over the weekend, we tried to do fun things with the kids to distract all of us from what was happening. We went to see the movies “Ice Age” and “Return to Neverland”. I cried throughout the movies especially to the song “I’ll Try” in “Return to Neverland”. Over the weekend I also took the girls shopping. In the back of my mind I was thinking (but at the same time trying not to think) about Kami needing to be in a hospital in the near future. Without making it too obvious to the girls, I bought everything we needed for a hospital stay, just in case.
The neurosurgeon had prescribed for Kami to start taking the steroid decadron for her back pain. This helped her sleep much better at night. It also gave her a huge appetite. It was also supposed to make her hyper active, but it didn't. Kami was rapidly losing her energy. I remember by Sunday afternoon she couldn’t even walk around the grocery store. We had to get a kids cart that she could sit in. That was very unlike her. Normally Kami was the one always running around everywhere. When Kami was a baby, we called her the Ford Explorer because she liked to crawl around and explore everywhere. This didn’t change as she grew up. She was always active and on the go. I became very worried when she didn’t even have the energy to walk around the grocery store!
Sunday was my mother’s birthday. I had no idea how she was coping with Kami’s news. Sunday was also Easter Sunday. We were invited to go to the country club for Easter brunch with John and Cynthia. John and Cynthia sponsored Francois and his brother, Thomas, when they first came to the US from Vietnam in 1975. We consider John, Cynthia and their children, Emily, John, and Michael, our family. Francois cried the whole drive along the river going to brunch and had difficulty keeping himself together when we got there. The kids ran around and had fun with the Easter bunny. It all seemed very sad and surreal to me. We didn’t talk about what was going to happen because we didn’t know.
Over the weekend, Francois frantically scoured the Internet for everything he could find on spinal cord tumors. I didn't want to know about what he was finding. I was too scared. I felt we didn't have a choice and we would just do what we had to do. Francois couldn't sleep. He was constantly on the computer. At one point, he called me over to look at the hospital in New York. The day before, Gonne had contacted one of the New York doctors via email on our behalf and got a response right away from Dr. Jallo. I looked at the New York hospital and the doctor who responded to the email. He looked like a young, smart doctor. I connected a real person with this idea of the New York hospital. The picture of Dr. Jallo got me interested and I got on the computer and started learning all I could too.
On Monday, April 1st, we waited to hear about when Kami’s surgery was going to be scheduled. We were told it would be either that week or the next week. It was difficult to schedule this surgery because the monitoring equipment was difficult to get. We got a phone call and the secretary told us Kami’s surgery was scheduled for Monday, April 15th. On one hand, I was relieved it was farther away than we had expected. But on the other hand, I could tell Kami was getting worse, fast. Her energy was becoming very low. She didn’t want to move around very much. Her shoulders seemed to droop, especially to one side. Her right leg seemed like it was starting to drag. I saw these changes occurring rapidly, within a few days. Her symptoms were subtle and I’m not sure if Francois saw the same things I saw. He had to go to work during the day, so he wasn’t with her as much as I was.
Should We Go to New York?
Monday and Tuesday were full of questions and discussions. Should we consider going to New York? Would insurance cover us? Maybe the website was not even a true representation of what this place really was. What if it was horrible? What about Dr. Epstein’s accident, could another surgeon really do a good job? Where would we stay? How long would we have to stay for? What about Gina and Duke? Could one of us stay home with them? What if something terrible happened to Kami in New York? We decided if we went, we all had to go.
In his email, Dr. Jallo said if we came, everything would be taken care of. How did he know? Did he realize we were thinking of bringing our whole family, all five of us? How would we get there on such short notice? It was way too much to plan. There was no way we could do it. We decided we should still be open to possibilities. Before Dr. Jallo would even consider operating on Kami, he needed to see her MRI. On Wednesday morning, April 3rd, Francois FedExed Kami’s MRI to New York.
On Wednesday, April 3rd, Duke went to daycare and since the girls were on their second week of spring break, we had to do an activity for the day. The girls wanted to go swimming at the club. Kami's energy was very low. We thought swimming would make her feel better. In the water, I held her in my arms and floated her all over the pool. We were the only people in the pool, so I sang to her as I floated her. She just melted in my arms. I became very emotional. I felt like this could be the last time I held her. I started getting very scared.
That night, Francois had to teach his evening class. Kami had so little energy, she could hardly go from one chair to the other. My stomach started churning. I called Francois to tell him to come home early. Something was very wrong. We put the kids to bed and I cried and cried. I was terrified Kami wouldn't make it through the night. I couldn't sleep. All I wanted to do was lie next to her and listen to her breathing. I managed to doze off for a few hours. At 3:00 in the morning I woke up with the word "pack" screaming in my head. I got up and packed. I just packed what was absolutely necessary and all the things we had just bought for the hospital. I ended up with one small suitcase and five carry-ons, one for each of us. I didn’t know if we would go to New York or not, but I wanted to be ready.
In the middle of the night I emailed Dr. Jallo and told him how I felt about Kami's condition and that I thought we might come to New York. When he responded that next morning, his tone changed to extreme caution. He said if it was an emergency, Kami should go to the emergency room. She should not fly because there were risks for her to fly. He hadn't received the MRI. He needed to see that first.
When Kami woke up that Thursday morning, she said, "I want to go to New York today. I don't think I will be able to make it tomorrow." That did it, that made my decision for me. We would go to New York. If things were terrible there, we could come back. The morning was complete panic. We needed a flight. We needed to take Kami to the neurosurgeon first to make sure she was OK to fly. I was in such a state I couldn't talk to anyone on the phone. Francois had to do it. Gonne tried to get us a flight, but called back to say we had to do it ourselves. They wouldn't give a flight to a friend. It seemed hopeless, but Francois kept working at it and then miracles started happening. Francois called the Corporate Angel Network. They would try to get us on the only direct flight that afternoon at 3:00 but it was full. We needed four seats. They called back a little later and said they had gotten us four seats at a reasonable price and that we needed to book the tickets by noon. We got an appointment to see the neurosurgeon at 11:00.
It was time to eat, get the kids and the bags in the car and go. We made it to the appointment at 11:00. The neurosurgeon examined Kami and saw a difference, but not the emergency situation we thought. Her energy level could be taken care of by an increase in decadron. We told him we were thinking about going to New York. He thought that was not necessary but thought she would be fine to fly. He thought she would be fine to fly…what did that really mean? Was he telling us to go? What about insurance? At this point, I didn’t care about insurance. Gonne showed up. We were all talking and time was ticking away. We had to make a decision by noon. On one hand he was reassuring us that she would be fine to stay here and wait until the 15th. He didn't see any need to move up the surgery date. On the other hand, he said she would be alright to fly. Kami herself wanted to go to New York. She didn’t even know what that meant. She heard us talking the last few days and she must have felt that going to New York was the right thing to do. At five minutes to twelve, I got up, stepped out of the office, made my way to a phone, made the call, and booked the tickets.
It was a miracle that Gonne showed up so she could drive us to the airport. We swung by her house to drop off her car, then she drove us in our car. We got to the airport with enough time to go through all the 9/11 security. When we got to the gate, I went up to get our seats. The ticket woman said we were on stand by and had to wait and see. I turned to leave. I thought twice, turned back and said we were with the Corporate Angel Network. The ticket woman next to her heard what I said, leaned over and handed me our boarding passes. We got on the plane and were at the very back, but at least we were all together. After the plane took off, I had Duke in my lap, the girls at my side, and Francois in the seat across the aisle. Everyone fell asleep for the whole plane ride. I knew we had made the right decision.
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