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799 Days of Cancer
The Story of Kami Nguyen’s Beautiful Spirit
and
Kami's Courageous Battle with Spinal Cord Cancer
By Kathryne Nguyen
Dear Gina, Duke and Maik,
This is the story of the 799 days your sister Kami lived with cancer.
May we remember her bravery and the struggle we all endured.
Love,
Mama
Premonitions:
Gina
Our oldest daughter, Gina, was always afraid of death. It was hard for her to go to sleep at night because she was always afraid she wouldn’t wake up. On April 18th, 2002 in New York, 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, most emotional moment I have ever experienced with her. I don't remember exactly what I said. I couldn't think of anything except telling her the truth which was that Kami was probably going to die. Gina cried like she had never cried before. We both held on to each other and wept. We held each other for a long time and felt very helpless.
That summer as Kami was going through her treatments, it seemed Gina was not afraid of death any more. She acted very brave. She went water skiing all over the lake at our friend Mona's house and wasn’t afraid. She wasn’t afraid to go to sleep by herself anymore.
Francois
Like many Asian fathers, Francois 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 that’s what they want to be when they grow up. They also always used to lie down and ask him to do "surgery" as a way to give them a back rub. I remember vividly Francois used to “slice” down the middle of Kami’s back giving her "surgery" and she always felt so relaxed. I am still wondering when we are going to find out the cardiologist connection with Gina.
TVs Crashing Down
The very first week of Kami’s backache, she was hanging on the door of the entertainment center like she had done a hundred times before. Suddenly the whole thing came 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. Everyone was OK. The TV was OK, but Francois got so mad, the TV got moved to the basement and there was no TV for a while. The kids (and I) could only last a few days without TV, so the little TV got moved out on to the porch so we could watch it there. 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 its cart. Luckily baby Duke was not standing in front of it.
In the apartment we were staying in, I don't know what happened because I was in the other room, but suddenly I heard the TV come crashing down. Luckily Duke was not standing in front of it. Everyone and everything was OK except one video tape got smashed. It was "The Scent of the Green Papaya," a Vietnamese movie about a little girl who comes to be a maid for a wealthy family. It was one of Gina’s favorite movies.
So, TVs crashing down. The only thing I can think of is that no one was paying enough attention to what was happening to Kami in the beginning and something had to get everyone's attention.
Forward
Events Prior to Cancer:
Our family went to Paris in August 2001, one month before 9/11. At the airport we found out Francois' passport had expired because he had last gotten his updated when we had gone to Vietnam after our wedding ten years earlier. Our Vietnam trip was the first time Francois had visited his home and parents since 1975. For some reason my passport was fine and I had gotten new ones for the kids for this Paris trip. Francois miraculously managed to go to Chicago, get a new passport and come back in one day and we all made it to Paris only one day late. We had a fantastic trip! We stayed with Francois’ cousin and her family. Duke turned one year on this trip and we had his first birthday at Versailles. We wanted to get the kids’ portraits done in Paris. We went to the Sacre Coeur in Montmartre because that seemed like the best place for portraits. We spent a long time walking around the square looking at all the different artists and watching them work. After a while a woman came up to us and asked if she could sketch Kami’s portrait. We agreed even though she didn’t have an art stand with everyone else or the same kind of paper. She really wanted to do Kami. She was drawn to her. After all the kids’ portraits were done, Kami’s really stood out from the others. There was something extremely special about it. The eyes were deep and dark and knowing. This portrait captured the essence of Kami so well, I used it for the cover of this book. I want to find this woman some day and tell her Kami’s story and thank her for her beautiful portrait.
We came home from Paris on Weds August 22nd. Francois went back to work teaching at his College. I had a new technology job with the public school district. Duke went off to daycare. Kami went to preschool and Gina started first grade at a wonderful private school. We were all happily in school. Then, that next week, on Tuesday, 9/11 happened.
Two weeks after 9/11, Dr. Epstein, a neurosurgeon in New York, got into a bicycle accident and sustained a severe head injury. It left him partially paralyzed and unable to do surgery. This would become critical for us in the months ahead. An interesting fact having to do with numbers is the date Dr. Epstein moved his clinic into the Beth Israel Hospital. Kami was born on October 5th, 1996 (10/5/96). Dr. Epstein moved the clinic into the 10th and 5th floors of the hospital in October of 1996.
Lance Armstrong was diagnosed with cancer in October of 1996.
About a month after 9/11 and about two weeks after Dr. Epstein’s accident, Kami celebrated her 5th birthday on October 5th, 2001. It was her golden birthday. It was her last cancer free birthday. We celebrated with her friends and had a great birthday party. The year Kami passed away, Dr Epstein wrote a book called If I get to 5. Kami got cancer when she was 5. She made it to 5. I wonder why Dr. Epstein chose the age of 5 for his book title?
That year no one in my extended family remembered Kami's birthday. It was strange. They normally sent something or called. Maybe everyone was still in shock from 9/11. I was mad and sent everyone an accusatory email. Everyone was sorry, some blamed 9/11, some were mad that I was mad. There were only four grandchildren in our family. I couldn't understand how they could have forgotten. To me, focusing on my children was the most important thing. Birthdays were their most important days. I felt disregarded. I felt hurt that they had forgotten about Kami.
I was going through a hard time with my parents. My parents were going through a divorce. The divorce was difficult for my parents and I got too involved with them. Sometimes I got very frustrated with their problems and I yelled at my own family. I wonder if family relationships have something to do with cancer.
Shortly after Kiki's birthday, (we called her Kiki up until New York when she decided she wanted to be called by her full name, Kami) we decided that 5 years old was too old for her to be drinking from a bottle. She only drank an occasional bottle at night when it was hard for her to go to sleep. We thought it would be better for her development to take her bottle away completely. Even though she was drinking healthy soy milk in her bottle, we took it away. She wouldn't drink soy milk from a cup. That was about six months before cancer. I wonder if the lack of healthy soy milk had something to do with cancer. Or maybe it was all those years of heating her bottle in the microwave. Do microwaves have something to do with cancer? I wonder.
That year, Gina and Kami had bunk beds in their bedroom. There was always a problem because no one wanted to sleep on the top bunk. We finally took the beds apart. They wanted to have their beds together, so we pushed them together to make one big bed. No one wanted to sleep on the outside of the bed because that was scary. Francois put the girls to sleep by sleeping with them on the outside next to Kami for security. Sometimes Kami got pushed to the crack in the middle of the two beds. We put pillows in the crack, but still it was not the most comfortable situation. When Kami first woke up with back pain, we thought it was because she had slept in the crack between the beds. Did sleeping in a bad position aggravate her spinal cord and cause cancer? I wonder.
One week before Kami first woke up with back pain, Gina had her first gymnastics meet. That was the first weekend in March 2002. My father, Grandpa Dick, decided to visit with his new wife Doris. We were nervous to meet Doris. Our anxiety, however quickly vanished the moment we met her. She was a delightful person and we were all relieved and happy to welcome her into our family. I will always remember driving around town that weekend with all of us crowded into our van and Kami saying "golly" over and over with a Southern accent just like Doris. Gina did very well at the meet and we were all happy for her including Kami who looked forward to her first gymnastics meet the next year, which of course never happened.
Summer in Paris 2001
Kami’s 5th Birthday
October 2001
Fall 2001
Winter 2002
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