Saturday, April 3, 2004
Kami had an MRI and the results were mixed. Many things were stable and some things have grown. The growth is not good news. It means that this chemo is not the one that will make everything shrink. On the other hand, it has been three months since her last MRI and having some stability is really a miracle.
We are still deciding the next course of action. We will probably stick with the same thing for now. It is very frustrating and scary to have to wait and see what new treatments become available, but that is what we have to do.
Kami is giving us the opportunity to dig deep and wide to help her. She continues to have a strong fighting spirit. She does get sad sometimes and said the other day that she feels guilty that everyone has to help her. We have to remind her that cancer is something society has a responsibility to find a cure for and that she is helping society by staying alive. Her job is to want to live each day, to wake up with plans, to do things that make her happy. She is helping us all see the preciousness of life. Our biggest hope is that there will be a cure for her.
Blessings to you all and thank you for all your love and support,
The Nguyen Family
Oxygen
April 5th seemed like an ordinary Monday. I took the girls to school and went up to work in the library. I got a call from Kami in the middle of the morning and came down to see what she needed. Kami said she couldn’t breathe very well and that she felt like she wanted to go home and have some oxygen. This wasn’t a totally unusual request. In the past, especially when Kami had a tantrum, she felt like she couldn’t breathe and wanted oxygen. Since the beginning, we’ve had canisters of oxygen in the house. We even got an oxygen machine in the house the first year because she felt like she needed oxygen so often. Whenever she was in the hospital for a respiratory problem, she was always put on oxygen. Kami was used to how it felt to be on oxygen and she seemed to know when she needed it and when she didn’t. I took Kami home that day and got her set up with an oxygen tank. Usually she would need oxygen for about a half an hour or so and she would feel better and wouldn’t want it anymore. This time when I asked her, she kept saying she still needed it. We only had a few hours worth of oxygen in the house, so I called Francois who got on the phone and got some more. A service came and delivered a machine for the house with a regulator to test her oxygen level and travel size canisters for her to use when she left the house. It seemed overwhelming that Kami had to be on oxygen all the time. She had done it in the hospital, but never before at home. We had an appointment to go into the clinic a few days later and when we called Dr. Moertel to see if we should come in earlier, he didn’t think we needed to.
I wanted to keep Kami home from school the next day, but Kami wouldn’t hear of it. She said she felt fine with the oxygen and didn’t want to miss anything. I wasn’t sure about bringing the oxygen to school, but Kami expected me to figure it out. That night I worked hard to figure out how many canisters she would need and how we would carry everything. It was actually very convenient. The canisters were very small and they gave us some nice carrying cases. The next morning we were ready. Kami didn’t think it was a big deal, but I did. Going around with oxygen was sort of taboo. People stared at you. I felt very confident handling the oxygen for Kami, but I didn’t feel like an expert at what to say to people about it. When we came into school, we passed by the principals office. I told him I would come and talk to him after I dropped Kami off.
The principal and I communicated all the time about Kami. In fact, we had a whole team of teachers who met periodically about Kami to make sure everything was going well. Overall, the team of teachers did a great job working together to make sure all Kami’s educational needs were met. I felt the team was a little too bureaucratic at times. There was too much discussing about Kami rather than doing things for Kami. The purpose of the group was discussing. I wanted the group formed in the first place, so I learned a lesson from that experience. I do think it was good, but it was too much talking and not enough action. Anyway, I stopped by the principal’s office after I dropped Kami off and talked to him about the oxygen. Right away he calmed my fears saying that nobody would think it was a big deal. He said that they would think it was just something else she needed and everything would be fine.
My good friend Mona stopped me in the hall concerned about Kami. I cried a little talking to her. At the end of the day Mona came to me and said she had been talking to some other mothers and they wanted to help us this summer. They wondered if Duke needed care and were willing to help out with him. She said that I would probably be very busy tending to Kami. We discussed how we thought her condition would probably be very bad this summer.
When Kami went to the clinic the next day, her oxygen situation wasn’t really talked about. We were more concerned with the hole that was getting much worse around her G-tube. We were recommended to go see a GI stomach doctor and made an appointment for that Friday. Kami’s exam and counts were fine. The oxygen didn’t seem like a big deal. Dr. Moertel told us to do what ever was comfortable for Kami and that she was fine to go to school. He set us up to start Kami’s third round of her new chemo. Kami went to school and did well. We met with a stomach doctor that Friday and he said he had never seen anything so bad. He got us something to use in the meantime, but we needed to see a specialist the next week at the GI clinic. We set that appointment up for the next Friday.
We had a nice Easter Brunch that Sunday with John and Cynthia at the country club. Our wonderful friend and babysitter Camila came with us. Kami was not able to interact very well, but she did great under the circumstances. She was excited to get dressed up, see everyone, and eat good food. Duke was the one who was difficult that day. He was in a bad mood, didn’t want to get dressed up, didn’t want to eat anything, and was difficult for me to handle. After brunch we dropped Francois and Duke home to take a nap and Camila, the girls, and I went out to see “Ella Enchanted.” It was a wonderful movie! It was Kami’s last movie.
Getting Ready for the Bake Sale
The next week Kami did well at school even though she was on oxygen. She especially had a good time in the kitchen helping the cooks. Since winter break when Kami lost her function to walk and stand, she was not able to do much at PE. Mr. T still tried to do as much as he could with her, but then Sandy, one of the cooks, came up with a brilliant idea. Sandy invited Kami down to the kitchen during PE time to help slice up fruits and vegetables for lunch. Kami thought this was the greatest! She loved cooking so much and felt so proud to be able to contribute something to the school. Sandy was so nice to always have something set out for Kami to do everyday. Kami loved slicing eggs the best. She sliced cucumbers, apples, and oranges, but eggs were her favorite. Even when Kami started loosing her grip in her right hand, she could still slice eggs. Sandy was so nice to Kami. Sandy was nice to everyone, but she was especially nice to Kami. She would sit and chat with Kami and sometimes bring her special treats. The time Kami spent in the kitchen was one of her favorite times of the day. That week Sandy had two special jobs for Kami. One job was drizzling chocolate over a bunch of rice crispy treats. The other was dipping strawberries in chocolate. Of course Kami got to eat some of her work which was the best part.
Kami loved cooking and everyone knew it. Kami’s teachers, Laurie and Ben, thought of a brilliant idea for a class project. They wanted to do something special for Kami that the whole class would enjoy. They also wanted it to be a learning experience for everyone. They decided to have a week long class bake sale. They decided to call it “Treats for Treatment.” They would learn about recipes, baking, advertising, selling, and collecting money for a cause. They decided they would use the money they raised to buy a play kitchen for the hospital Kami went to. They got the idea sometime in the winter and planned for a spring bake sale. They did many learning activities around the bake sale theme. They did lots of reading and math bake sale activities all through the month of April. Kami was in love with anything that had to do with the bake sale. That was one reason school became so important for her. She didn’t want to miss a single second of it. As the time got closer to the bake sale, we realized the bake sale was the same week as my birthday. That was going to be a nice birthday present for me. The week before the bake sale, bake sale activities got more intense. Things were being painted, signs were going up, learning how to count money became very important, etc… The whole class became very excited. One day that week it seemed like all Kami did was bake all day. After school that day she said, “That was my best day ever!”
The School’s One Hour Rule
On Wednesday the week before the bake sale, the principal saw us leaving school and asked if I would come to his office the next morning. He also said he was going to talk to Kami’s doctor before we talked. I said I would come and didn’t think anything of it.
That afternoon when we got home, the clinic called and asked if Dr. Moertel could come to our house that evening. Of course he could. What was this about, we wondered? Dr. Moertel came over explaining that he had to talk to us about some things and didn’t want to trouble us by making us come in to the clinic. He started out by talking to us about Kami’s current condition. There was a scale that patients were rated on based on their condition. This scale made them eligible for certain types of chemotherapy. He explained to us that with the loss of function in Kami’s hand as well as her need for oxygen that she had gone down on the scale and wouldn’t be eligible for the same things that she would have been just a few weeks ago. I wasn’t exactly sure why he was telling us this. I think he wasn’t happy with the results of the chemo she was on now and was looking for something else. I think he was telling us that there wasn’t anything else for her at this point.
Dr. Moertel handled Kami’s situation very carefully and respectfully. He never suggested to us how much time Kami had left. The fact was that no doctor knew this for sure. I respected Dr. Moertel for never assuming that he knew. He always supported our best hopes. He always encouraged us to give Kami the best quality of life we could. That evening he slowly approached us with the real reason for his visit. He told us about the Do Not Resuscitate paperwork. In the meantime, Cynthia came over. It was usual for Cynthia to come over from time to time to check on us. Cynthia always had a very strong intuition about when we needed her and always seemed to come over at very crucial moments. This was a very crucial moment for us and there she was. She sat with us and listened as Dr. Moertel told us about the paperwork and what we had to do with it. He told us to look it over and give him a call in the next couple of days to go over it with him. Then he left. John was a funeral director. We had never talked to John or Cynthia about what we would do. I started to say something to Cynthia and she told me we didn’t have to talk about that now. It was getting late, so Cynthia gave us her sympathies and left also. We went on with our routine that evening and were so tired, we didn’t think about anything.
The next morning I dropped Kami off at her class and went to see the principal. I had helped Kami with a project in class the day before, and thought maybe that was what he wanted to talk to me about. I realized Kami needed more assistance in class now that she couldn’t grip things and I could stay with her and help her. I was planning to tell the principal this. When I got to his office, I was asked to go to the school psychologist’s office. The school psychologist’s office was bigger, more private, and used when there were more than a few people at a meeting. I went to the office and met with the principal, the assistant principal, the psychologist, and the school nurse. I wondered what was up, but since I saw and talked to these nice people almost every day, I didn’t think this meeting was very unusual. As it turned out, I should not have attended this meeting without Francois and they should not have confronted me alone.
I offered my suggestion about helping Kami more in the classroom. They informed me that Kami could only come to school for an hour everyday. I was shocked! I asked if they had talked to Kami’s doctor and on what grounds they were basing their decision. They had left a message for Kami’s doctor and hoped to talk to him later that day. They did not say anything about why they had made this decision. They just said they thought it was best for Kami to choose her favorite class of the day and only come for that one. I tried to tell them that she was fine to be here all day. I told them that we had just talked to her doctor about it the day before. I always took Kami home when she felt like going home. I wasn’t keeping her at school against her will. She was the one who wanted to be here. I was only honoring what she wanted. Didn’t she have the right to be here? They kept saying no, that she could only come for one hour a day. I was in utter shock and disbelief! A very strong emotion was triggered inside of me. Who said they could be the boss of us? True, they were the administrators of this private school, but surely this school was not run as a dictatorship. Maybe they were able to see things I didn’t see. Maybe they were concerned for the other students. Yes, it was hard to see a child suffer from cancer, but did that mean that child was not allowed to be seen? When Kami was at school, she was happy and everyone knew that. Everyone knew how much Kami loved school and loved all of them. Kami’s motivation to go to school and do her best even in her condition, inspired others to do their best at school. What ever her case was, I would think that we could have a discussion and come to an agreement about what should happen next for Kami. I was willing to negotiate. I would have been willing to find alternative solutions. I was a very reasonable person. I would have been willing to work something out. They were being unreasonable.
The bake sale started that next Monday. Kami was to make an announcement Monday morning at assembly about the bake sale that was to begin that afternoon. She had already practiced her lines on stage with her classmates. She was very excited about being on stage. She had said she thought her being on stage would make more people come to the bake sale. Were they asking for her to choose to either come for assembly or come to the bake sale? Yes, they were. They were adamant. It almost seemed like they were scared, like they were going to loose their jobs or something if they didn’t make this happen. I didn’t know why they were doing this. I didn’t know what to do.
If Francois was there, he would not have believed what they were saying. Francois was raised in the 60’s and 70’s in Vietnam. He was raised to go against a system if it was wrong, and do what was right. I was raised here in the USA in the 70’s and 80’s. I was raised to follow the rules of the system no matter if they were wrong or right. I started crying. I had so many mixed emotions. I couldn’t think straight. I didn’t understand why they were doing this. I was thinking of Kami. Who was going to tell her? I knew it was going to break her heart. They acted as if what they were asking would be no a big deal for us. They didn’t respond when I started to cry. They didn’t wonder why I was so upset. They must have been clueless as to how important each day was to us and how much we had to work and fight for a life of dignity. Did they really think we should put Kami in a darkened room and wait for her to die? It reminded me of the Secret Garden. I wanted my child to live in the sunlight having fun with her friends. Kami knew all about the Secret Garden. She didn’t want to be cooped up in the house either. She always wanted to go out, everywhere. How was I supposed to tell her she should stay home and could only go to school for an hour? What would we have done for the rest of the day? She would have gotten bored and who knows what that would have done to her will to live. I told them it was gong to be too hard for me to tell her. They assured me they would help me tell Kami.
I think the school nurse was a little shocked by the whole situation. She said that Kami was entitled to a teacher coming to our house for a few hours a day. The principal looked surprised by this information. He said that he would have to look into that. I was relieved to hear this information. That sounded better, maybe that would be fine. I was skeptical though. If the principal hadn’t known this information until just now, would he actually make it happen? The process of getting a teacher to come to our house was probably as likely as getting an assistant for Kami in school, which never happened. I asked them when this one hour rule was supposed to take effect. They said immediately. She would have to leave after an hour today. I couldn’t believe it! They were going to enforce this today without any warning? They were just going to tell us to leave and expect us to do it immediately?! I couldn’t believe my ears! I left the office in tears not knowing what to do.
The first thing I had to do was call Francois. I went up to the library where I could make a phone call in the office. My good friend Vera happened to be in the library typing on a computer. Margaret, the librarian, had asked Vera to do something that I was supposed to have done that morning. Vera saw that I was upset and followed me into the library office. Margaret was also there. I looked at them and said, “They finally kicked us out. I need to call my husband.”
Subconsciously I knew this might happen. I was quite frankly surprised it took this long. This was a private school. They didn’t have people with disabilities here. Private schools could choose who they wanted to attend. I was surprised they let Kami attend in the first place. They did let Kami attend and not only that, they gave her financial aid. I wept with happiness when the financial aid package arrived in the mail. I thought, “This is a good school.” If I had to be with Kami at school, I would not have been able to work to pay for it. With financial aid, it worked out that I could stay with Kami at school. They accepted Kami. They wanted her to be there.
They seemed so supportive the whole time. Everyone made friends with Kami. Even the head of school had a special friendship with Kami. At times things got difficult for Kami because of her condition, but they always bent over backwards for her. I think because Kami’s condition was getting very bad, they got scared and didn’t know what else to do. That was not a good enough excuse. They should have worked together with the parents to find a reasonable and ethical solution to this crisis.
My reaction to any crisis was to dive head on into the situation and get everything done to make it better. I was always very good in a crisis. I saw what needed to be done. I leapt into action and told everyone what to do. I, however, was usually too emotional to do things myself, so I asked other people to do things for me. Francois was also good in a crisis. At first he would freeze and not know what to do. But he was always able to keep his emotions in check and always did everything that needed to be done. We worked well together because I told Francois what to do and he did it. Sometimes he didn’t do what I told him. Sometimes he thought I needed to calm down and rethink the situation. He was usually right and was the voice of wisdom. If he spoke out, I would try to argue back, but eventually I listened to him and eventually I agreed with him and we changed our course of action. That was how our family worked.
I called Francois and he came right over to the school. He wanted to meet with the administrators to talk over the situation. I didn’t want to talk anymore, I was too emotional. Even though I knew what to do in a crisis, I was not good at confrontation. I was very good at advocating for what Kami needed. I was very good at talking to people who intended to help Kami and telling them what she needed. I was not good at confronting people who wanted to go against Kami or make things difficult for us. If someone tried to make things difficult, I would just go around them and find another way. If I tried everything and it still didn’t work, I got Francois to try. That was why he always dealt with insurance people and medical suppliers. He was so patient and persistent. He didn’t let people say no to him. He stuck with people. If they keep saying no to him, he just kept sticking with them until they would finally say yes.
I was scared of people who went against Kami and wanted to go hide. I wanted to hide that day. Wasn’t I going through enough? I was worried about Kami. I knew her condition was getting very bad. I did what ever made her happy and comfortable. If I thought keeping her at home or taking her to the hospital would make her happy and comfortable, I would have done that. According to her doctor, who had just seen Kami the day before, she didn’t need to be in the hospital or at home. He told us just the day before that she was fine to go to school all day. Kami wanted to be at school. It didn’t matter if she wasn’t able to do much physically, she was still able to learn. She was surrounded by people she loved. Just being there and watching what was gong on made her happy. I might have understood if they had told us from the beginning that they didn’t have the resources to have her attend, but it was almost the end of the school year. There was only one month left of school. And had they forgotten about the bake sale?! How could they do this to her on the week of her bake sale?! It was just insane! What were they thinking? Just a few days ago the principal was so supportive. What made him suddenly change his mind?
It dawned on me that the day before, the head of the school had come for lunch. She saw me helping Kami eat. She saw her with oxygen. Kami must have looked startling different since the last time she had seen her. The kids and teachers saw Kami getting worse, but since they saw her everyday, they were used to it. I don’t know if the head of school prompted this new directive, but whatever it was, it was wrong. If they were scared something would happen at school, they shouldn’t kick her out for that. Anything could happen to anyone at school and you have to deal with it. If something happened to Kami at school, we would have dealt with it. We had been dealing with it all along. Cancer was a progressive disease. We were told that things would get bad gradually, and they were. Kami was totally aware of her surroundings and was able to communicate and learn things. She just wasn’t able to do things physically. If things got so bad where she wasn’t aware or able to communicate, I would not have brought Kami to school. I thought she was doing fairly OK.
After Francois arrived and I told him what happened in the meeting, he was mad that he was not included. He wanted to go talk with them. He asked if I wanted to go with him. I said I didn’t, I had heard enough. Vera offered to go with him. Vera had been an exceptional friend to us. She had gone out of her way to do extraordinary things to help us. We could never thank Vera enough. She claimed she was the one who should be thanking us because she was honored to be in our presence. On the contrary, we were honored to be in her presence. Vera so cheerfully brought joy to our family. She was a very creative and smart person. And she was a lawyer. She had an equally great husband, Phil, and three extraordinary daughters. She had a dog, Shadow, who came with her all the time to play with Kami. Shadow was Kami’s therapy dog. We had become very close friends with Vera and her family. I thought it was a great idea for Vera to go with Francois since I was a basket case at that moment. Vera could listen more objectively and with lawyer ears to what they had to say.
The administrators were very accommodating and met with Francois and Vera to discuss everything. I went to see what Kami was doing in class. Laurie wanted to know what was happening. I told her what had happened. Laurie wanted to volunteer to be one of the teachers who would go to our house. Laurie decided to take Kami into another room and talk about this new plan of action. Both Laurie and I tried to tell Kami what would now be happening. Kami didn’t really understand. Kami didn’t understand because there were so many things that still needed to be done for the bake sale. She didn’t understand what she was supposed to do and not do. Laurie did a great job trying to explain to Kami, but it was even hard for Laurie to explain it in a way that made sense. We thought we came to a fairly good understanding with Kami. Kami said she would try this new way of just coming to school for an hour a day.
I didn’t want to deal with anymore confrontation. I thought I would just do what they wanted, take Kami home, and we would deal with everything the next day. I got Kami’s stuff and took her out to the car.
On the way out, Kami said, “Where are you going? I have Spanish now.”
I said, “You don’t have to go to Spanish. We can go home.”
She said, “I don’t want to go home and I don’t want to be late for Spanish.”
I said, “How would you like to go shopping and out for lunch?”
She said, “No! I want to go to Spanish! Let’s Go!”
What could I do? It broke my heart to deny her this. She didn’t want to go shopping; she wanted to go to school. I turned around and took her to Spanish. The Spanish teacher said I didn’t have to stay, that she was fine with Kami. I went back upstairs to see what was going on. Francois and Vera were still in there talking. I went up to the library to do something. Finally, Francois and Vera came up to tell me what happened. They were both very angry. Vera kept saying that all they could say was that it was an arbitrary decision and that arbitrary didn’t mean anything. I don’t remember what else they told me, just that the administration was still firm in it’s decision.
That night Francois and I talked at great length about what we were going to do. He thought Kami should just go to school as much as she wanted to. I thought we might get in trouble for that. He didn’t understand why I was worried about getting in trouble. I didn’t understand either.
The next day was Friday and Kami had a morning appointment at the GI stomach clinic. We had to drive to a different clinic for the appointment which took us a little longer. The doctor looked at the hole around Kami’s G-tube and was very alarmed. He had never seen anything like it. We were doing a good job of caring for it. He didn’t really know what else to do. He told us to just keep doing what we were doing, keeping it clean and covered, and hopefully it would heal on its own. After the appointment, Kami wanted to go to her favorite Greek restaurant for lunch. The people who owned the Greek restaurant had become part of our family. We went there so often and they loved Kami. Kami loved their lemon soup, Greek salad, moussaka, and beef tongue. By the time we finished lunch and had ice cream from the best ice cream shop in the world next door, it was too late to go back to school, so we just went home.
On the way home, I called Laurie to tell her Kami was not coming to school at all that day because she had had a doctor’s appointment and it ran late. Laurie asked when Kami was going to come on Monday. I said I didn’t know, but that Kami wanted to be there for the assembly. When I look back on it now, I shouldn’t have said anything about assembly. It was just natural for me to tell Laurie what Kami’s plans were. As I look back on it now, I was too honest. I should have said we weren’t coming to assembly and then just shown up. But I wasn’t aware at the time that I should have been devious.
When we got home I got Kami situated in front of the TV and my cell phone rang. It was a school number and I figured it was going to be Gina asking how she was going to get home. I answered the phone and was surprised to hear it was the principal. He called to say that he had talked to Laurie and she told him that we might be coming for assembly on Monday. I said that we might. He reminded me that we could only come to school for an hour and didn’t we want to come during the bake sale? I liked this principal very much. I always got along with him. In fact, I liked to joke around with him and we laughed a lot together. This was not a joke or a laughing matter. Why was he being so strict about this? After Monday it wouldn’t have been such a big deal to bring Kami just for an hour of the bake sale, but on Monday she wanted to come for assembly and the bake sale. Why wouldn’t he let her do that? Maybe he didn’t want her to be seen on stage because she looked bad? I don’t know. If that was the case, that was not a good reason. What he was saying to me and my daughter might have affected her life. If Kami could not do what she wanted to do, she might decide she didn’t want to live anymore. Kami lived for school. If she couldn’t go, it would affect her will to live. I got very serious on the phone with him. I was not good at standing up to people, but I stood up to him. I asked him what he would do if Kami showed up for assembly. He said probably nothing, but then she would not be able to go to the bake sale. I mustered all the courage I had and told him that he better be very careful about what he said. I just very firmly told him that he should be very careful about what he said. We left it at that and ended our conversation.
That evening we decided we should call one of the school’s board of trustee members to see what was going on from their point of view. We were friendly with one of the families on the board and thought they could help us work something out with the administration. Francois talked to both the husband and the wife on the phone. They had not heard anything about the situation and were very concerned. They told Francois they would look into it. We also called Dr. Moertel to make sure he thought it was alright for Kami to go to school for more than one hour. He said he had talked to the principal and told him so, but that he did not have control over what the principal did.
A friend of mine called me and said that she thought maybe it had something to do with oxygen. She thought maybe the school wasn’t covered by their insurance for someone to be in the building for more than an hour with oxygen. I didn’t know what to think about that. Should the school have been covered? Was oxygen that dangerous? Was that true about other places we went? How did people go around with oxygen? We were not told about any of these issues when we were given the oxygen. How did we find out where we could and could not go and for how long? If this was the reason, I felt the school should have told us. We would have understood and tried to work something out. As it stood, they still had not given us a reason for the one hour rule.
Kami’s Last Weekend
The next day was Saturday and we took the kids to the Art Museum. We loved this museum because they had a lot of Asian stuff. They had many Buddha statues and Francois liked to say that each one of the kids was a certain Buddha statue. They took this very seriously. They would say, “Really? Which one am I?” and he would tell them. As we passed by Kami’s statue, Kami stopped for a while and prayed. It was so sweet. She usually didn’t do that. She was usually in such a hurry to see everything. This time she took her time and prayed. Then we went to the Japanese tea room exhibit. There were guards here and there around the museum and one of the guards started watching us as we went by the tea room. We stopped and were talking in front of the room. Francois got up close to show Duke something. The guard came right over to us and told Francois not to touch anything. This guard was a young college student and Francois lost his temper. He said in an angry voice, “I know. I know not to touch anything. I am a college professor. I am not some hood off the street. I’m here with my family. Do you think I’m going to come in here and destroy something?” The guard took out his radio and called for backup. Soon, two more college age guys approached us. I said I didn’t want to get in trouble by the museum police and took the kids around the corner to look at other things. I came back a few minutes later to see what was taking Francois so long. He was talking and laughing with the guards just like his usual self. Francois could talk to people so well, but if someone said something stupid to him, he would fight them right back. We walked around the museum for a while longer. What happened at school had bothered him and he was on edge from that. We joked about it and were glad Papa didn’t get arrested for disorderly conduct.
On Sunday we invited Kami’s best friend Marley over to bake something for the bake sale together. I had to go out for a while to do something with Gina. When I came back, they had to show me what they had been practicing while I was gone. Francois had them practicing their lines for the assembly the next day. I thought we weren’t going to go to assembly because we had to choose only one hour to go to school. I was a little mad that he had had them practice their lines. How could I stay mad when they were so cute saying them and so excited about it? He said that it was good for Kami’s breathing to project her voice and he was proud of her. I think he wanted to see Kami do a good job up on the stage. I think he wanted to ignore or even go against the one hour rule. He had asked the principal to put the one hour rule in writing and the school hadn’t done that yet, so in Francois’ mind there was no rule until it was put into writing. I wasn’t so sure they had to put something in writing. I didn’t know what to think.
I was scared. I didn’t want to jeopardize our reputation at this school. I didn’t want to cause any problems because I wanted our kids to be able to attend this school for years to come. I was really stuck between a rock and a hard place. I didn’t want to go against the school, but I didn’t want to disappoint my daughter either. I didn’t know what that disappointment could do to her spirit and ultimately her life. Even Dr. Moertel said that he thought Kami was living for school. I knew she would be crushed if she could only go for an hour a day. I didn’t know what to do, so I tried to let the decision go. Maybe if we came to assembly and after they saw what a good job she did on stage, they would change their minds. I still couldn’t believe they would enforce this rule on the day of her bake sale. On the other hand, I could believe it. I grew up in this uncompassionate, white dominated, rule abiding country all my life. I had heard many stories about how inflexible and cruel it could be. I even imagined they would have a police car parked out in front of the school just to intimidate us. I started to laugh at this idea because if they wanted to take Kami away, they would have to have a handicap accessible police van, and who ever saw one of those! My imagination was going crazy at this point. Surely they wouldn’t do anything to us. Then I started thinking about the school community. Who would be on our side and who would side with the school just because they were scared? That Sunday morning in the newspaper, the Parade magazine had a big article about Brown vs. The Board of Education. They had a picture on the cover of a black girl facing a white girl in a classroom of white children. I couldn’t believe that was the Parade magazine feature that week! It was a surreal coincidence. I felt like pinning that picture to my shirt as I walked in to assembly the next morning. All Kami wanted was the right to go to school.
Before Kami went to bed that night, I assured her that she could go to school the next day just like normal. I went to bed that night with a bunch of thoughts racing around in my head. I had trouble sleeping. I don’t know why, but Kami had trouble sleeping too. Francois called me in to the room in the middle of the night to talk to her to help her sleep better. I stayed in the room with them because Kami kept waking up all night asking if it was time to go to assembly yet. I knew she was excited, but this was more than that. I don’t know if it was because she heard us talking about the one hour rule all weekend and she was worried. In the back of my mind I thought maybe it was because her condition was getting worse. What ever the case, I was tired and I ended up threatening her that if she didn’t sleep from now until I woke her up in the morning, that she would not even go to school at all the next day. This kept her quiet, but she still had trouble staying asleep. I kept hearing her wake up. By about 5 am, I told her that she wouldn’t be able to go to assembly because she hadn’t had enough sleep. She finally fell into a deep sleep then and slept until late in the morning. When it started getting light out, even though I hadn’t slept much, I was wide awake because it was my usual time to get up. Since I wasn’t going to school with Kami that morning I turned on the TV and watched for a while. As I flipped through the channels, I landed on an infomercial about a cancer center. I watched as cancer survivors gave lots of testimonies about how this place had given them hope when they had no hope left. They were trying to sell people to come to this center like they were trying to sell vacuum cleaners or something. It was weird.
The Bake Sale
Later that morning Francois took Gina and Duke to school and I waited for Kami to wake up. Two friends came over to the house when they didn’t see us at assembly. They wanted to make sure Kami was alright. Kami woke up around 11:00 and I got her up and dressed. Kami was ready and wanted to go to school to get ready for the bake sale. My friends said they would come with us so we wouldn’t have to face any situation alone. We went to school and were in time for lunch. We ate lunch and went up to Kami’s classroom. After lunch, the class got everything set up for the bake sale. I practiced making change with Kami. We got her cupcakes ready that she had baked the day before with Marley. Everyone oohed and ahhed over Kami and Marley’s cupcakes because they were so wildly decorated. Francois showed up with the video camera. I was glad that he was there. We all got into place for the sale. Right before the customers came in, Kami reached over and took my hand. She said, “I’m so excited, I have to hold your hand.” With her cute little hand in mine I started crying. How could this be happening to my precious little girl? I wiped my tears and people started coming in to buy treats for treatment.
It was crowded and Kami’s cupcakes went like wildfire. She madly made change for everyone’s dollars. Even the principal bought one of her cupcakes. Kami’s teachers were worried because the baked goods were supposed to last for the four days of the bake sale and they were almost all gone in one day! It was a big success. After the bake sale, we happily went home knowing this day was over. Kami was happy that the first day of the bake sale was a success even without her assembly announcement. She was excited to make something else for the bake sale the next day. We decided that she would stay home in the morning to bake and only go to school in the afternoon for the bake sale. This was fine with her. This took the pressure off me having to decide her schedule for the next few days.
Monday Night
That night we went to bed as usual. Again, Kami could not get to sleep. She kept waking up every so often and calling for us. It was very late and I was at my wits end not having slept well the night before. Why wasn’t she sleeping? She should have slept fine from a full day and not having had a good night’s sleep the night before. Francois and I were both worried and couldn’t sleep. I got very emotional about Kami’s situation and the fact that she wasn’t sleeping. With all the pressure, I couldn’t keep it together anymore. I thought the person I needed to be here was my mother. I just had an intuition to call her and ask her to come. Francois agreed and said he would call her while I tried to get Kami to sleep. He made the call in the middle of the night to ask her if she could come the next day. She would. Kami was still not sleeping, so we decided we should call a doctor. The doctor on call was Dr. Messinger. I was very glad it was Dr. Messinger because I trusted him. I told him the situation and he said that we could give her a low dose of a sleeping medicine to help her sleep. This sounded good. Francois went out to the pharmacy in the middle of the night and got the medicine. We gave it to her and finally we all slept.
Tuesday
I woke up at my regular time in the morning. Kami didn’t wake up at her usual time, which was good, and I let her sleep. I started to get a little worried as it got a little later. I knew the sleeping medicine was supposed to have worn off by then. Kami finally woke up, but I couldn’t understand her. Her speech was slurred. I thought this could have been from the sleeping medicine, that she was still groggy from it. I called the clinic and Dr. Moertel said the medicine should have worn off already. I panicked. This was one of the symptoms of her condition getting worse. It seemed she was much worse. After the ordeal of the last couple of days, not sleeping, and now her speech, I thought this was very bad for her. I started thinking of my family and all the people I had been communicating with via my web updates. My last update had been pretty positive and had not said anything about oxygen or how her condition had gotten worse. I felt I needed to inform my family and friends now. As Kami continued to rest in her bed, I went to the computer and wrote a few sentences. I didn’t really know what to say. I didn’t want to go into detail, but people needed to know things were getting worse. I also wanted to give people a chance to come and see her if they wanted to. I updated the website and sent an email off to the list of over 100 people in my address book.
Tuesday, April 20, 2004
Dear Family and Friends,
Kami's condition is rapidly deteriorating.
We welcome anyone who would like to visit Kami into our home.
Emails and postings on the website are also welcome.
We are being inundated with phone calls, so please try to refrain from calling.
Sincerely,
Kathryne and Francois
About an hour later, Kami’s Kindergarten teachers showed up at the house. I hadn’t meant for school people to come over. They had all just seen Kami the day before at the bake sale. The posting was meant for friends who lived in the area who hadn’t seen her for a while and who could stop by for a visit. School people were on my mailing list too and I hadn’t thought to sort out the list. Oh well, it was good to see Molly and Jayne anyway. I hadn’t gotten Kami out of bed yet and she looked very bad laying there in the dark, unable to speak well. Her teachers stayed for a while visiting with her and left with tears in their eyes. They cared for her so much and hated seeing her like that. I decided to get Kami up and dressed and ready to start baking something.
After I got her up, more teachers started arriving at our house. I’m sure Kami was happy to see them, but I don’t think she understood why everyone was there. She knew the bake sale was that day and they needed more treats. She wanted to get baking. I was happy to have people come over. Kami always did better when we had people in the house. The problem was that her speech was very hard to understand. She always wanted everything a certain way and it was hard for anyone to understand what she wanted. It must have been very frustrating for her to try to communicate when no one could understand her. I knew she needed to eat and do her baking. I tried to have her focus on that. I tried to be her interpreter as best as I could.
So many people came that the day, it ended up being like a party. I told Kami that she didn’t need to go to the bake sale. She had done a good job the day before and that it would be fine to send her cupcakes with someone else. She was fine with this because she was enjoying herself so much at home. People from school came and went. After school, friends started coming over and my mother arrived from out of town.
In the evening people were still in the house. They wanted to stay and support us and spend time with Kami. As soon as Duke came home he stayed up in his play room watching TV the whole time. He didn’t like people in the house. He had had a busy day at daycare and fell asleep early. Gina enjoyed everyone being at the house and felt it was a nice way to support Kami. Francois made a good steak dinner. Kami enjoyed her steak very much.
Tuesday, April 20th,
Kami’s Last Day at Home
Tuesday Night
Later, a home care worker and a social worker arrived. I’m not sure what prompted their coming over. Maybe it was my call to Dr. Moertel that morning about Kami’s speech. We had a big discussion about the role home care was going to play. We hadn’t been using home care for a while. One problem with home care was when they came over, they didn’t help with anything. They didn’t help me change Kami or give her a shower. They didn’t help me transfer her from one chair to another. They didn’t even help rub her legs. Basically all they did when they came over was talk. When I say talk, I mean we did most of the talking. We gave them lots of information about Kami. They didn’t give us much information or advice. After a while of this, we didn’t see a need for home care to come over at all. I think that is why the social worker came with the home care worker this time. I felt very intimidated with the social worker there. I felt that if we didn’t use the home care services, something bad was going to happen to us. I agreed to set up a schedule for home care to come over. That was part of the problem too. They had to have a schedule. I didn’t know when we would be needing them. I asked if I could call them if we needed something and they could come over the same day. They had a problem with this. We spent a long time going around and around. We were all frustrated. We came to some kind of compromise, but I don’t remember what it was. As they were leaving, they asked if we had taken our Do Not Resuscitate paperwork in to the clinic. I thought we were supposed to keep it in the house for emergencies. They said that they also needed a copy of it in the clinic. They took the paperwork and said they would bring a copy back for us the next time they came.
It started getting late and everyone left. We got Kami to bed and she fell asleep right away. Everyone else went to sleep, but I couldn’t sleep. I was very wound up from the day’s activities and very worried about Kami. My best friend Gonne stayed with me a little longer. We had a very spiritual conversation about what was happening. We talked about so many things. I had known Gonne since college and we had been through so much together. I was glad she was with me. I hadn’t been sleeping or eating very well the last three or four days. I felt like I was a little out of my body. At about midnight, Francois woke up and told me to go to bed. Gonne went home and Francois and I went in to check on Kami. She was fine and we both slept in the room with her.
A few hours later the oxygen machine started beeping. I jumped out of bed to see what was wrong. The first thing I noticed was that it seemed like her cheeks had lost some of their puffiness. The oxygen tube had fallen a little out of her nose. I put the tube back to her nose and turned up the oxygen. Kami had very puffy cheeks and we never had any problems keeping the oxygen tubes tight against her face and in her nose. It seemed like she wasn’t breathing at all. It seemed like the oxygen wasn’t helping. It was very scary. I thought she had passed away. I quickly went and woke Gina and Duke up and we started crying and saying goodbye to her. I felt like her spirit was above us, looking down at us in the room. After a minute or so, it seemed like she started breathing again, but very faintly. Francois and I didn’t know what to do. I decided we should call an ambulance and take her to the hospital. I told Francois to call an ambulance and he did.
It became very chaotic. The ambulance arrived and we didn’t have the paper work we were supposed to have because the home care nurse had taken it to make a copy. I called Dr. Moertel at home and woke him up to talk to the ambulance people. One of the ambulance workers got on the phone with him. Luckily Dr. Moertel took care of everything. They took Kami out to the ambulance on a stretcher. Friends started arriving. I don’t even know who had called them. Francois took his car and followed the ambulance to the hospital. I got Duke and Gina and went with Mona in her car. When we got to the hospital, John and Cynthia were there. My friend Margaret had brought my mother. Kami’s teacher Laurie came, and Vera came. I was so touched that all these people came. They all had families to take care of, it was the middle of the night, but our friends and family were there for us. They stabilized Kami in the emergency room and she was sleeping. She was alright. They planned to keep her there for a little while longer then transfer her up to the fourth floor. She was alright. She was going up to the fourth floor.
I was in a state of panic and shock. I was very upset. Mona asked me how much sleep I had had recently and I told her not very much. She suggested I go get something to help me sleep. Francois stayed with Kami. Gina and Duke were taken by Vera and Laurie. Mona and my mother took me next door to the hospital to see if I could see someone for myself. I met with a doctor who happened to be a dad at the school and he gave me some sleeping pills. We went up to the fourth floor with the intension of my lying down on a couch and getting some rest. Dr. Moertel was there. I couldn’t talk to him. I wasn’t myself. I was scared and I didn’t want to know how bad her situation was. Francois talked to him. I took a sleeping pill and lay down on the couch in the parent room. Suddenly I became very dizzy and threw up. I tried to rest again, but I couldn’t. I had to see Kami. Francois and Dr. Moertel had worked out a plan for Kami. I didn’t want to know exactly what it was. Francois told me in general what was happening. She was not doing well.
Wednesday, April 21st
More people started arriving at the hospital. My brother even flew in to see her. They put Kami in a special room that I didn’t even know existed. It was a very big, very nice room. It accommodated a lot of people. Kami woke up and started interacting with people. She couldn’t talk very well, but people talked to her. Many people came in to see Kami. There was a lot of talking and activity around her. I knew she liked this. Kami’s music teacher, Beth, came with her guitar to play some songs for her like she had the day before at our house. My friends Margaret and Lohini were there and the four of us sang some school songs for Kami. Kami could hardly talk at all, but she moved her mouth and sang along with us. She especially liked “Hole in the Bucket.” I was so happy to see her happy and singing. This was my birthday present. April 21st was my birthday. Kami stayed alive for my birthday. She stayed alive one more day for me. The ladies and I sang my favorite song, “Dona Nobis,” for Kami. Cynthia was sitting with Francois watching us and they were crying together.
A lot of people came in that day to talk to Kami and visit with her. Duke had been taken to daycare for the day. After daycare, he was picked up by Camila who brought Duke to the hospital for a little while then back to her mother Maria’s house to spend the night. Gina spent the morning with Vera. Gina came back to the hospital and spent the afternoon with Kami, then Vera took Gina to her house to spend the night.
Later in the day, Kami’s physical therapist, Lynn, came in with a special language board she could use to help her communicate. While they were working together, Francois and I went out to talk with Dr. Moertel and two of Kami’s nurses who had come over from the clinic. We described what had happened the few days before with her not being able to sleep and her loosing her ability to speak clearly. I was very tired and didn’t really know what I said. I think I said something sarcastic about Francois in front of them and he got mad at me. Francois had started to shut down. He didn’t say much and didn’t want much to be said. This was a very scary time and he wanted us to go back and focus on Kami. When we went back to the room Kami was doing well and there were still a lot of people there. I felt like I was going crazy. It was a very strange feeling. I didn’t know how much longer Kami had, but I knew I needed to get some sleep. There was no way I would be able to sleep with so many people in the hospital. Now that Kami was being taken care of by Francois and the nurses in the hospital, I felt like I should go home and try to sleep there.
I left without telling anyone because I didn’t want anyone to come with me. I needed to be alone. I had to do this alone. I walked outside to the parking lot. I felt like I was in a foreign country or in a movie. It seemed like everything was strange and different. It felt like everything was in slow motion. I found the car and started to drive home. I thought the only thing that could really help me sleep was to have Duke with me. I drove to Maria’s house, got Duke and took him home. I felt a stab of pain when we got home and walked in the house. I saw the empty wheelchair in the hallway and started crying. I forced myself to focus on what I had to do. I had to sleep. I fed Duke some dinner then we watched TV for a little while and played with his toys together. I felt myself getting tired. I called Francois to see how Kami was doing. He told me he would take care of her overnight and for me to get some sleep. Duke and I took some toys into the bedroom and played on the bed. I knew it was too early for Duke to be tired, but I said it was time to go to sleep. He lay down without any fuss. He closed his eyes and was asleep in a few minutes. As I lay there next to him I felt myself relax and let go. I knew Kami was being taken care of. I knew she would hang on. She let me sleep that night.
Thursday, April 22nd
I woke up early on Thursday. I knew Kami had made it through the night. Kami and I had a very deep connection. We had spent practically every minute together for the past two years. I knew she had made it through the night, but I didn’t know how much longer she had. I called Francois and he said she was hanging on. Gonne had spent most of the night helping him and he would send her and my mother over to help me come over to the hospital. I felt the need to quickly gather up some things from around the house that Kami would want with her in the hospital. I also felt the need to bring her wheelchair and the van over. Of course we would need her wheelchair and the van, we had to bring them. Gonne and my mother arrived a few minutes later. They helped me load up the van and wake Duke up and get him ready. Gonne went home at that point to take care of her family. My mother helped Duke and me into the van and we drove over to the hospital. It was very strange pushing Duke in Kami’s wheelchair up to Kami’s room.
When we got to the room, there was a big sign on the door that said “Do Not Enter.” Francois had changed the mood of the room dramatically from the day before. We walked in and I felt a very still, peaceful atmosphere. He had shut the world out to make a quiet sanctuary for Kami. When I walked in and started talking, Kami woke up, turned her head, and called out to me. I was so happy to see her. I went to her side and started talking to her. Francois opened the curtains to have some light come into the room. He started to go outside to take care of Duke and make sure no one else came in for a while. He wanted peace for her.
I could tell Kami was much worse. I knew she didn’t have much time left. I told Francois to come back and talk to Kami with me. I told him this was it. I don’t know how I knew, but I knew. We started talking to her about everything. We talked about everyone in her life and how much they loved her. We talked about all the things she had done in her life and what an important person she was. We started thinking of a special place for her to imagine. We decided it would be a beach in Hawaii. We described for her a beautiful beach and that all the people who loved her were there with her. Kami couldn’t talk to us. She looked at us and used her eyes to communicate. She kept looking from me to Francois. She looked at us very deeply. We knew she was listening to us and understanding because she would react to things we were saying with her eyes. We stayed with her and talked to her for a long time. It was very calm and peaceful.
Kami’s Kindergarten teachers, Molly and Jayne came in. We invited them to join us in a circle around Kami. We told them we were talking about Hawaii and what a wonderful place it was. Kami started getting tired and closing her eyes. We just watched her and spoke softly to her saying how much we loved her. Kami closed her eyes and her breathing became slower and slower. My mother came in and stood with us in the circle around her. We all watched as the monitor slowed down and finally came to a stop. We cried and hugged each other and said our final goodbyes to Kami. Kami lay there peacefully as if she were sleeping. Francois and I cried and stayed with her for a long time. We felt her spirit rise above us. We loved her so much. Her courage, strength, love and compassion will live with us forever.
Wednesday, April 21st,
Kami’s Last Day in the Hospital
Thursday, April 22, 2004
Dear Family and Friends,
Kami passed away peacefully this morning surrounded by her family, friends and favorite teachers. We will make future announcements regarding funeral arrangements on this website. Emails and postings on this website are appreciated. Thank you for your continued support.
Sincerely,
Kathryne and Francois
The Poem of Silence
by Gina Nguyen
I wake up in my room, silence,
no birds chirping like they usually do.
I go into my parents' room, silence,
nobody's there.
Everybody's in the garden
looking at the statue of Kami,
flower's everywhere,
everybody's there
imagining her spirit lift, silence.
Bells rang in my heart
as I read a poem of Kami
and her beautiful spirit.
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