July 2002
Visitors and 2nd New York Trip
People were so extremely important to Kami. Luckily we had a lot of visitors during the summer. My mother and brother visited. Francois’ brothers and their families visited. And Francois’ cousin and her family visited from Paris. Later my father and his wife visited. We had these wonderful out of town visitors as well as many neighbors and friends over all the time. When people came over it was such a relief for all of us. We were so thankful for the help they gave us, the food they cooked, and the time they spent with the children.
Kami got the idea that she would like to go back to visit New York sometime. As I said, when she was rolling around on the bed in pain, we liked to talk about people and things we were going to do. Kami felt she didn’t have the chance to have enough fun in New York because she was so sick at that time. The city appealed to her with its shops and restaurants. New York was exactly her kind of town. I wanted to give her a trip. Gina and Duke were happy and busy in their summer programs. I wanted to do something special for Kami after all she had been through. The idea for this trip came when we read that the Dalai Lama’s doctor was visiting New York. We thought it was a long shot to get in to see him, but we wrote a letter to the person in charge and she wrote us back with an appointment date and time. We had a plan.
It was good that we had visitors at the house to help Francois with Gina and Duke at the time of our trip. Kami and I flew to New York for three days. Of course we stayed at the Excelsior Hotel again. The first night we ordered fried calamari and spaghetti to be delivered to our room from Carmines. It was glorious to be so luxurious. The next day, we went to the hospital. We saw everyone and played in the playroom. Kami didn’t want to leave, so we stayed there the whole day. It was wonderful! She got to visit all her doctors and do projects without having to get any treatments. She felt satisfied after that day. The next day we met with the Tibetan doctor, Dr. Dhonden. It was an unusual but good experience. He prescribed some Tibetan medicines for the nervous system. He told us not to take them when Kami was on chemotherapy drugs. This was because the chemo was so strong it would overpower the subtle effects of the Tibetan medicines. After our visit, we did some toy shopping and ate ice cream near central park. Kami had a great time and we both felt so happy that we had taken this trip. Kami had pain on the way home. We had a stop over and it ended up being a very long day. Overall it was worth it.
Kami's 2nd New York Trip
Monday July 8th, 2002
We would like to thank everyone for their generous contributions to help fund our New York Trip! It was better than we expected. We visited the hospital where Kami's surgery was performed in April. They have a play room for outpatients where everyone gathers. It has such a welcoming, homey atmosphere. They have a wonderful staff helping the children make crafts, play games, and talk about what they are going through. The parents get to talk to the staff too and to each other. Everyone mixes and mingles as they talk, eat, and has a good time. Kami got to see everyone she made friends with from before. It was such a treat for her to visit without getting any treatments. She spent a satisfying and long day at the hospital and was ready to go back and relax at the hotel. She will remember this special day with much happiness.
The second day, Kami had an appointment with the Tibetan Doctor, Dr.Dhonden, who was the Dalai Lama's doctor for 20 years. He examined her very carefully and talked to us about her condition. He gave her special packages of Tibetan medicines to take, and advised her on what foods to avoid. Kami has taken his advice very seriously and is carefully monitoring her diet to make sure she follows his instructions. He told us that the medicines are effective, but work very slowly to strengthen her nervous system. We are to send away to his shop in India for refills. Kami should try to see him again in about six months to reevaluate her condition. Since Dr. Dhonden is quite old, it is getting more difficult for him to travel. However, we are going to contact our Tibetan friends here at home to see if there is any one for her to see here.
We continue to use complimentary medicines to enhance Kami's treatments. We feel these types of treatments are gentle and help to build up her immune system. They help make Kami feel better about her treatments overall. We feel this positive frame of mind will help her overcome her extremely challenging condition. Kami's pain is less now as we increased her dosage of the steroid decadron. The side effects however, are increased appetite and mood swings with lots of anxiety. We await her MRI on Wednesday, July 10th. We will keep you updated.
We are enjoying our 4th of July weekend as we host our cousins from Paris. We thank all who have visited including Uncle Dai, Uncle Thomas, Nana and Uncle Dave. We thank all those who have sent cards, checks, and gifts. And we thank those who have written messages in the guest book--we check it everyday. We send blessings to you and your families as we know we all have challenges in our lives that we must work to overcome.
Life is precious,
The Nguyen Family
Bad News
There was a reason Kami was having a lot of pain that summer. She had what was called an “episode.” Despite the chemo and radiation, her tumor almost doubled in size. Statistically she was not supposed to have survived this episode. The day after her July 10th MRI, we met with Dr. Moertel and he gave us this bad news. He said we should prepare for the end very soon. We were devastated. We thought we were doing all the right things, how could this happen? Cancer is an unknown cruelty. Despite all the best efforts to control it and get rid of it, it can still grow. We cried a lot at the meeting and on the way home.
Because of pain, Kami needed a reclining wheelchair so she could lean back and be more comfortable. This would allow her to stay in her wheelchair for longer periods of time. It was hard to get this kind of wheelchair approved by insurance, but we finally did. It just so happened that the wheelchair lady was at our house right when we got home from the clinic after getting the bad news. Luckily we had some friends and family there to help. We were devastated, but we had to take care of the matters at hand. Kami tried different chairs and picked one that was the most comfortable. We had to go on with life that day. As Hillary Clinton said, we had to soldier on.
Friday July 12th, 2002
How cruel is life? Kami had her MRI on Wednesday and we found out the results yesterday. The tumor has almost doubled in size and has begun to spread to other parts of her spine. She will get a port inserted this weekend and start more aggressive chemo on Monday. If she can handle this chemo, she will do it for five days then take a two week break and then get another MRI. The chemo we will start is called Irinotecan and has been shown to reduce some of these types of tumors. However, our doctor is telling us this won't be a cure and is starting to prepare us for the end.
It is happening so fast. How can this be part of life experience? I have never known something to be so cruel and devastating. A few short months ago Kami was so active and full of life. Now we watch her try so hard to feel better and cure herself. We watch as her life slips away from her. Her pain has not gone away, she is taking more decadron to relieve it, but as soon as we try to lessen the dose, the pain comes back. We still try to hold on to the hope that miracles will happen and turn the situation around.
I think of my mother's mother, my Grandma Fran, who just passed away on Tuesday at the age of ninety-six. Her eldest of three children, my Uncle Charles, passed away in an accident in his early 20's. My mother always tells the story that Gram said, "At least we had the gift of having our son for twenty-four years." Gram lead a very full life and we will always remember her with such fond memories. We will all miss Grandma Fran very much.
Kami was a wonderful surprise for us. We didn't plan on having another child so soon after Gina was born. When we found out I was pregnant, we didn't know how we could handle two girls so close together in age. Their personalities turned out to be so different from one another. They grew to become best friends and more joy than we could have ever imagined. When Duke came along, he was a combination of the two personalities and both girls got along with him so well. Now Gina and Duke are bonding more closely together as Kami has to deal with her own situation. They both love Kami so much, I can't imagine what this is going to do to them.
We need more support now than ever. It is hard for us to think of and tell you what we need, so if you think of something please just do it, and we will greatly appreciate it. We are so thankful for all the loving support we have had in the past few months. Even though we want to escape from everyone, we love it when people make the effort and reach out to us. We are thankful that we have been able to communicate over the Internet. It is so painful for us to talk, writing seems to be better. Please keep those emails coming or better yet, leave a note in the guest book. We love you all and hope you will help us through this very difficult time.
May God and Buddha be with us all,
The Nguyen Family
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