Kami's Story

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Dear Friends,

At the end of March 2002, our 5 year old daughter, Kami, was diagnosed with a tumor inside her spinal cord. This condition was extremely rare. Only about 100 children a year in all of North America and Europe are diagnosed with this condition. Ninety percent of these tumors are found to be benign. Our family went to see a specialist in New York where surgery was performed. We were expecting the tumor to be benign but found out it was malignant. Kami had cancer. We came back home to start radiation and chemotherapy treatments. The tumor caused Kami's right leg to lose function. Kami was unable to walk and needed to be in a wheelchair. During the summer of 2002 Kami went through radiation, chemotherapy, and physical therapy treatments. Midway through the summer, Kami suffered a lot of nerve pain and an MRI showed significant tumor growth. After this episode, Kami's prognosis was very poor and we thought we would lose her in the next few months. Kami was then given higher doses of chemotherapy which miraculously slowed down the tumor growth. Unfortunately, small tumors were also detected elsewhere on her spine. Throughout all this, Kami had to be on a steroid called decadron which was the only drug that reduced her pain. The decadron dramatically increased her appetite. She gained weight and was very uncomfortable. Kami lost her hair and learned to live without her beautiful jet black hair.

By the winter of 2003, the main tumor began to shrink and miraculously in the spring, Kami regained her ability to walk! We were able to get her off decadron and she lost all the weight she had gained. Kami had a glorious spring and summer walking, dancing, playing on playgrounds, playing running games, walking on beaches, and riding horses.

Tragically, in the fall of 2003 the small tumors that were elsewhere in her spine began to grow. Tumors also grew in her brain stem causing Kami to lose her hearing in one ear and some of her eyesight. Kami underwent whole brain radiation and more chemotherapy and was given decadron for pain. She started gaining weight again, but things appeared to be somewhat stable after radiation. A few months after radiation in the winter of 2004 there was more tumor growth in her lower spine causing Kami to loose all function in both of her legs. She had to be in a wheelchair full time. She got an electric wheelchair so she could get around by herself at school. Kami was very smart and did very well in school. By the spring, tumors spread back over parts of her spine that had already been radiated and she couldn't get those parts radiated again. We did all we could with radiation. Kami tried over 12 different kinds of chemotherapy drugs and there was nothing left for her to try. The treatments helped to slow things down, but in the end cancer overtook her. Kami died at the end of April 2004, when she was 7 years old.

We were told from the beginning that there was nothing to cure Kami's type of cancer, but we were hopeful that something could be found or something could be done. Kami kept fighting until the last breath of her life. She was courageous and determined to believe in miracles and have a great quality of life. She inspired us to keep fighting despite all the adversaries and barriers that we had to overcome. Kami spoke her mind with no fear. She showed us how to love and brought out our compassion. Kami was very creative and made her life fun and exciting every day. Kami loved learning. She always woke up early and looked forward to a great day at school. Many people loved her wit and zest for life. Kami loved her family, friends, and teachers. Kami, we miss you and love you so much!!! You are our Beautiful Spirit!!!

More energy, money, and efforts are needed to fight the cancer war so children don't have to suffer. Kami wanted all of us to be a part of this great responsibility. Kami always said "Do it right now!" Cancer should not happen to children, but it does, and we are all responsible.

Sincerely,

Francois and Kathryne Nguyen

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