Premonitions:
Our oldest daughter, Gina, was always afraid of death. She couldn't go to sleep at night because she was always afraid she was going to die. The day we found out Kami's tumor was malignant, I didn't know what I was going to say to Gina. This was the hardest moment I have ever experienced. I don't remember now what I said, but I couldn't think of any thing except just telling her the truth which was that Kami was probably going to die. Gina cried like I have never heard her cry before. She is not afraid of death any more. She is very brave now. She went water skiing all over our friend Mona's lake and had a great time. Now she's not afraid to go to sleep by herself.
My husband, like many Asian fathers, always wanted his children to be doctors when they grew up. When the girls were very small, he taught them how to say cardiologist and neurologist. I don't know why he chose those particular kinds of doctors. He assigned Gina to be the cardiologist and Kami to be the neurologist. We have many moments on video where the girls say what they want to be when they grow up. They always used to lie down and ask him to do "surgery" as a way to give them a back rub. He used to slice down their backs giving them "surgery" and they always felt so relaxed. I am still wondering when we are going to find out the cardiologist connection.
The very first week Kami had a backache, one night, she was hanging on the door of the entertainment center like she had done a hundred times before. Suddenly the whole thing cam crashing down! The heavy TV came down with a boom and thank God, little baby Duke was not standing in front of it like he normally did. The TV was OK but Papa got so mad, the TV got moved to the basement and there was no TV for a while. The kids (and the Mom) could only last a few days without TV so the little one got moved into the front room. The living room stayed quiet.
One of the first days in New York, we were in the hospital Play Room where all the cancer families gathered. I was trying to convince the doctors that Kami needed surgery as soon as possible because I could see her rapid deterioration. Suddenly the TV came crashing down off it's cart. Luckily baby Duke was not standing in front of it.
In the apartment we were staying in, I don't know what happened, but suddenly I heard the TV come crashing down. Luckily Duke was not standing in front of it. Everything was OK except one video tape. It was "The Scent of the Green Papaya" a Vietnamese movie about a little girl who comes to be a maid for a family. Gina always loved that movie, Kami thought it was boring.
So, TVs crashing down, the only thing I can figure is that no one was listening and something had to get everyone's attention.
Diagnosis:
One Sunday morning Kami woke up with a back ache. It must have been because she slept in the crack between the two beds that had been pushed together. It would go away in a few days. It was fine the day before at gymnastics. At preschool I had just talked to her teacher about how Kami was making up lots of stories lately. We also talked about how she always wanted to take a nap and she slept so soundly. Meanwhile, she kept waking up a few times every night complaining that her back hurt. By Thursday her teacher said, "At least she is being consistent and saying it's her upper back." That day Kami kept bugging me to call the doctor. I called and our regular doctor was not there on Friday so we had to wait until Monday. That seemed like an eternity to Kami, but I wanted to see our regular doctor.
Monday came and we went to see Dr. Soumekh. We told her our story and she was very curious especially about the nighttime waking. She very quietly said, "You need to go get an MRI tomorrow." She went out and made the appointment for us.
MRI, MRI, what was that for? We had no idea what lay ahead of us. On Wednesday Kami and I went in for the test. Somehow Kami knew how important this test was. She lay down completely still for over an hour.
Dr. Soumekh called the next morning and asked Francois and me to come in right away. That's when I broke down, I called him crying and he came right home. It was Thursday of spring break so the kids were home. We all went over, the kids played in the waiting room. Dr. Soumekh told us Kami had a growth on her spinal cord. When we got the news, Francois broke down. How could something like this possibly happen? We were sent over to talk to a neurosurgeon, Dr. Partington, at Gillette right away that morning. After Dr. Partington examined Kami, he told us she would need to have surgery as soon as possible, either next week or the week after----Total Shock! Kami seemed basically fine except she kept waking up in pain at night. We were being told she needed surgery next week! The risks of this surgery 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 do this surgery. Dr. Partington does one about once a year, there is a surgeon in Rochester who does them less frequently. He mentioned a surgeon in New York, but heard that he had just been in an accident.
We were sent away waiting to hear when our surgery date would be.
The Decision:
Cynthia came over that night like she always does just when we need her. She was amazed at how calm we were. Actually, I had been crying all afternoon already. I was worried how and what I was going to tell people. She gave me the very good advice that I had the privilege not to tell people if I didn't want to. That lifted a big weight off my shoulders.
I had been very bust that year. I had a demanding job and three children. One thing I consciously tried to cut out was talking on the phone. I realized it took up so much of my time and even though it was something I really 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. It was and continues to be a very difficult thing to give up.
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 had a motorcycle accident and injured his spine and was paralyzed from the chest down. This was his first trip to where my parents live since the accident. It bothers me very much that something so horrible and so similar has happened to both my sister and me. I can't even imagine how that phone call telling my family our news affected them. It was extremely painful for me.
The next person I called was my best friend, Gonne. I don't remember that call, but I brought the kids over to her house the next day. The kids had a lot of fun over there. Gonne is an amazing person and somehow she had already researched other doctors on the Internet and found the hospital in New York that our neurosurgeon had mentioned. Dr Fred Epstein was famous for his work on spinal cord tumors and had been on Nightline. Even though he had been in an accident recently, she encouraged us to look into his program.
Over the weekend, we tried to do fun things with the kids. We went to see movies and I took the girls shopping. We bought everything we needed for a hospital stay, just in case. The neurosurgeon had prescribed Kami to start taking the steroid decadron for 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 rapidly lost energy. I remember by Sunday she didn't even have the energy to walk around the grocery store, we had to get a cart that she could sit in. That was very unlike her.
Over the weekend Francois was frantically scouring the Internet for everything he could find. I didn't want to know what everything was. I felt we didn't have a choice and we would just do what we had to do. He couldn't sleep, he was constantly on the computer. At one point he called me over to look at the hospital in New York. Meanwhile, Gonne had contacted one of the New York doctors via email on our behalf and got a response right away from Dr. Jallo. So I looked at the New York hospital and the doctor who responded to the email. It got me interested and I got on the computer and started learning all I could.
On Monday we waited to hear from the neurosurgeon about when the surgery was going to be. It was hard to schedule because they needed special monitoring equipment. Both sensory and motor monitors were needed for this surgery. If the spinal cord was getting damaged, the monitors would tell them when to stop. We got the phone call and surgery was scheduled for Monday April 15th. On one hand I was relieved it was so far away. But I could tell Kami was getting worse, fast.
Monday and Tuesday were full of discussions. Should we consider going to New York? Maybe the website was not a true representation of what this place really was. How could we leave the land of the Mayo clinic? Would insurance cover us? Where would we stay? How long would it be? Could one of us stay home with the other kids? What if something happened in New York? 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 the whole family? How would we get there? It was way too much to plan. There's no way we could do it. Before Dr. Jallo would even consider operating on Kami, he needed to see her MRI. On Wednesday morning Francois sent the MRI to New York.
On Wednesday the girls and I went swimming. Kami's energy was so low. At one point I held her in my arms and floated her all over the pool. I sang to her as I floated her. I felt this was the last time I would be able to hold her. She just melted in my arms. I started getting scared.
That night Francois left to teach his evening class. Kami was so low she could hardly go from one chair to the other. My stomach started churning. I called Francois to come home early, something was wrong. We put the kids to bed and I cried and cried. I was terrified she 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 in the morning I woke up with the word "pack" screaming in my mind. I got up and packed. I just packed what was necessary and all the new things we just bought. I ended up with one suitcase and five carry-ons, one for each of us.
I emailed Dr. Jallo and told him how I felt about Kami's condition and that I thought we might come. When he responded that morning his tone changed. He said if it was an emergency she should go to the emergency room. She should not fly, there were risks in flying. He hadn't received the MRI, he needed to see that first.
When Kami woke up that 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, I was ready to go. 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. Gonne tried to get us a flight but called back to say we had to do it, they wouldn't give it to a friend. Then Miracles started happening. We got an appointment to see the neurosurgeon at 11:00. 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 booked. We needed four seats. They called back and said they got them at a reasonable price and that we needed to book them by noon.
That was it. It was time to eat, get the bags and the kids in the car and go. We made it to the neurosurgeons on time. He examined Kami and saw a slight difference but not the emergency situation that 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. 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. I didn't think she would make it to her surgery date. At five to twelve I got up, stepped out of the office, made my way to a phone, made the call and booked the tickets.
Thank God Gonne showed up so she could drive us to the airport. We got to the airport with plenty of time to go through all the security. When I went up to get our seats, the woman said we were on stand by and had to wait. I turned to leave, thought twice, turned back and said we were with the Angel Network. The 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 of the plane, but at least we were all together. After the plane took off, I had Duke in my lap and the girls at my side, everyone fell asleep for the whole plane ride. I knew we had made the right decision.
To be continued...