Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 2
Summer 2002
Pain
Like so many other things, Kami’s pain was on again off again for a while then it hit hard. She would have some pain one day then be fine for many days, then it would come again, then she’d be fine for a while. Then the pain struck with a vengeance. The pain was usually associated with the time of day she got decadron. Dr. Moertel told us to be more consistent with her decadron dosage and not to skip any anymore. Then Dr. Moertel went to Europe for two weeks toattend an oncology conference. During those two weeks Kami’s pain got worse. We talked with her radiation doctor and another oncologist. They suggested trying Tylenol with codeine. When we gave that to her, it made her sleepy but it didn’t do anything for her pain. She would want to go to sleep, but ended up rolling around the bed in pain. Then they suggested morphine. They tried to assure us that it was fine to give her morphine. I thought morphine was addictive and we were extremely reluctant to give her this. We did end up giving her morphine one day and it knocked her out. She slept almost the whole day and when she woke up, she was still in pain.
The pain was in her upper back right in her spinal cord and shot down into her arms. She would roll around on the bed moaning and sometimes screaming. I didn’t know what to do. No medicine would work. It was the most awful helpless feeling. I wanted to hold her and comfort her but she didn’t want anyone to touch her. I found that if I talked to her, that made her calm down a little. So I talked to her. She hung on to my voice as if it were a life preserver. I talked to her about anything I could think of. She liked to hear about what activities we were going to do and people she would see. Sometimes I would make up stories or tell her ones I remembered. I couldn’t read from books because she thought those were too boring. She needed to hear something exciting and she didn’t have the patience for chapter books. She hadn’t discovered the joy of chapter books yet. I became Shaherazade, telling Kami stories so she wouldn’t go mad. I couldn’t believe my five year old daughter was going through so much pain and suffering. She was almost done with radiation and would have to be taking the dragon pills again and she had to get on that damn radiation table a few more times.
Luckily Francois’ brother Thomas and his family came from Texas. The kids all started playing together and that made us all feel better. Kami was not in pain all the time. It would come and go. She was able to have some fun, especially with her cousin Paul. Paul was in high school and Kami loved him. Kami made up a funny name for Paul. She called him Ghoi. Ghoi was constantly at Kami’s side making her laugh or just being with her. That was the start of their very special relationship. After the Texas cousins left, it was easier for Kami to finish up her last days of chemo and radiation and be so over with that!
June 2002
Monday June 10, 2002
Kami is near the end of her radiation. She is now taking the second round of chemo pills. She has been experiencing some pain lately. This has been difficult for us. We think we have it under control with medication, but it is so unpredictable. We don't want to completely knock her out, but it is so hard to see her in pain, it is hard to find a balance. We think there is some swelling around the tumor where she is getting radiated. After radiation and this round of chemo, she will be getting a couple weeks break and we hope she will do some good recovering.
Physical therapy continues to be helping as her leg keeps getting stronger. She hopes to go from walker to crutches next week. She continues to do energy work called Qi Gong as a way to keep her mind focused on healing her whole body.
Dr. Moertel is meeting with other oncologists at a conference in Europe and they will be discussing Kami's case to help determine what the next plan of action will be. Kami's next MRI is scheduled for July 10th. Depending on the outcome of the MRI, she will be scheduled for the next round of chemotherapy. If the tumor has shrunk down significantly, then they prescribe a very high dose of chemo to get rid of the rest and hope it doesn't reoccur. If it has not shrunk, they say do a lower, longer dose to shrink it and then do the high dose after that. Whatever the case, we are just at the beginning and have a long way to go. That is very hard for us. We feel like we have gone through so much already. It is amazing how much strength we have to find to go through all this. At the same time we are trying to do normal things and have as much fun as possible this summer. Normalcy and fun are very important for healing and for the rest of the family.
We hope for miracles and miracles are happening. It is a miracle Kami is with us doing as well as she is. We are so thankful! We take this opportunity to make changes in our lives and do things that are truly meaningful. Summer school approaches. Francois has a full schedule. Duke starts his fun summer camp. The girls will both go to a summer arts camp. I will go with Kami to get her used to getting around a new environment. I will also encourage and empower her to talk to the other kids and teachers about her situation. The girls are so educated about many complex issues now. They are proud of what they know but uncertain of the future. We all are. We pray for peace and healing in our lives.
Love to you all.
The Nguyen Family
June 12, 2002 Kami Completed 5 Weeks of Radiation!
Summer School
Finally, Dr. Moertel came back from his trip. When we told him about Kami’s pain, he told us to increase the decadron. It was obvious to him, how could we have not thought of that? He told us that using decadron was an art and its use eluded many people. We slowly increased her decadron and it indeed helped her pain.
We had already planned for both of the girls to go to a summer arts program at their school. Gina had gone the year before and we thought it would be great for Kami to get used to her new school the summer before she went to Kindergarten. It may sound strange that we wanted Kami to go to summer school, but why not? Kami was done with radiation and doing well with physical therapy and energy healing. She wouldn’t start her next course of chemo for a while. She needed to be around other kids. She was lonely.
Kami ended up not liking summer school. The teachers and students were very nice, but Kami didn’t feel part of the group. It didn’t bother her now for me to be with her at school. In fact, she had gotten so used to my being with her all the time, that she wanted me there. I probably could have done a better job initiating activities that she could have done and helped her interacted more with the other kids. At the time, I was very tired and didn’t have the energy to figure this out. I don’t think the teachers had experience with someone in a wheelchair. There were too many activities that she couldn’t do. There was a great drama teacher who made a big point of including Kami and made her feel very special. He was wonderful, but there was too much physical activity in drama and Kami didn’t want to figure out how she could participate. There was also a wonderful assistant teacher. She was Vietnamese and later we found out was the daughter of a very good friend of Francois’. She also paid special attention to Kami and made a special connection with her.
One day the power went out at school. This brought on another level of awareness of being in a wheelchair out in society. Luckily I was right there, because Kami started having a panic attack. She was scared about getting stuck inside the elevator. She was scared about being on the top floor of the building where she would have had to be carried down the stairs. We tried to reassure her that people would always be there with her and the power would come back on eventually, but that didn’t help. Her increased anxiety was also due to her increased decadron dosage.
Even though there were some very good people at summer school, there were enough bad experiences that after a while, she wanted to give up on the program completely. I let her. At least she got a sence of the school and I think that was very important.
Cancer and Society
I would like to say something about cancer and our society. Too much is expected of the parents of sick children. We as parents were pushed farther than anyone should be expected to go. The doctors and nurses were wonderful and did their part when we were in the hospital or the clinic. Social workers and home care workers tried to be helpful. Friends and family offered support. But the reality was that all of the daily hard work that had to be done for Kami was our responsibility. We did everything we could for our daughter, but there was so much to be done, it was unbearable. We were physically, mentally, and emotionally exhausted all the time. If we wanted any assistance, we had to work extra hard to ask for it. People would help out here and there and we appreciated that help very much. But that help was not enough. We didn’t want to blame any one person. We understood that everyone had a busy life and their own personal agendas. However, it was not helping Kami that we as parents were so heavily burdened with her day to day care without any means of relief. People say you need to take care of yourself before you can take care of someone else. I didn’t see how we could have done that.
Our society should offer relief for families with sick children. Cancer, like so many other diseases, was not our fault. We felt cancer should be everyone’s responsibility. The saying “ask and you will receive” should be changed to “look around and give.” It was hard and humiliating for us to ask for help. Most of the time we were so overwhelmed, we didn’t know what to ask for. Sometimes we’d ask and not receive, and that was very frustrating. I would think of people and what they were good at and try to fit tasks with people, but most of the time I didn’t have the energy to do that.
I also want to criticize this society in terms of how we feel morally about sick, handicapped, or otherwise “helpless” people. We don’t want them. We don’t want to know about them. I know I felt this way deep down, until this happened to Kami. I know I did not play my part in going out of my way to help those in need or even feel compassion for the needy. I was nice to people, but I never really did anything to help, nor did I care to. People sometimes ask me now, “Don’t you think Kami is better off now that she has been taken away from her suffering?” And the answer is NO!!!!! It would have been much better if Kami had lived! She wanted to live! If she remained sick, handicapped, or physically disfigured, we would have dealt with that. If she was in pain, we would have figured something out to relieve her pain. Even in her condition, she wanted to live! Words can not describe the love we felt for her or the love she had for life. It was immoral that her life was taken away from her. It is immoral that this country lets so many children die of cancer!!! They die unnoticed. We don’t see it. About 2,300 children die of cancer every year. That is almost as many that died in 9/11. We should be appalled! We should be outraged! Our country should spend billions of dollars to do something about this! Childhood cancer should be stopped. It is the moral obligation of our society to figure out what is killing our children. How much money does our government spend on cancer research? How much do we spend fighting wars in other countries to protect the future of our children when our children are dying right here in our midst?! More research needs to be done! Lots more research needs to be done!
The only way I can accept Kami’s death, is to believe in random accidents. The only way I can go on living in this society is to believe that we all did as much as we could and it was the will of the universe that she got this rare cancer. The best thing I feel I can do is write her story so others will become more aware of what happens to a child with cancer. In experiencing Kami’s ordeal, I have come to realize that helping others is the meaning of life. We all need each other and we need to help each other. When we cut off helping each other, everything falls out of balance and we are alone. It was hard to always be there for Kami. I was tired and totally burned out, but I felt so much love for her and from her. Love was worth all the work.
Monday June 24, 2002
Starting summer school brought a different realization for us. Kami had to go to a new school in a wheelchair. No one knew her as the active girl she once was. She got many stares and people asking "what's wrong with her?" This was very difficult to deal with. As we go around town, we are more aware about how important handicap accessibility is. If something is not accessible, Kami wants to give up and go home.
Kami is still dealing with pain from radiation. The first few weeks of radiation went so well, we were wondering what all the fuss was about. Now we know what pain is about and we wonder how long it will last. They say radiation affects everyone differently so it is hard to know. Pain medications work, but have side effects. We don't want to over do it because then she becomes miserable in other ways.
I've been reading the Bernie Seigel book, Love, Medicine & Miracles. I have learned that it is good for Kami to take more control of her situation instead of having people do things to her all the time. She needs to have the feeling she is right and not be corrected or lectured to. We've given her some things to help her take more control and do things herself. Her favorite is her cell phone. She learned how to use my cell phone and took it over. She loves to call and talk to people on the phone, so don't be surprised if she calls you!
A very fun and exciting activity for Kami is that she got a violin and is taking lessons from a wonderful teacher. She is very good and is very excited about this. Gina is taking piano again and it will be wonderful when they can play together. We are still working on the bike situation. We got a bike called a Love bike, but it didn’t work our because it didn’t have any back support. We hope to get her a bike she can ride by herself very soon. We hope to get equipped so we can go on family bike rides. She loves to swim, so we hope to get her comfortable in many different pools this summer. We have a little blow up pool in the back, but she is not comfortable going in it yet. It hurts her so much to see kids playing and having fun like she used to do. So far when she sees this, she wants to escape, go inside and watch TV. We are not sure what will motivate her to get out there and try things. Right now she is very frustrated. Meanwhile, Gina and Duke are bonding more than ever. This is good for them, but Kami is always left out. The three of them used to have so much fun together, now it's hard for Kami to have fun. We pray this will not be the case all summer. We pray her pain will go away and she will get up and practice moving around and get better and better.
When Kami is on her bed rolling around in pain, I talk to her about the good things we are going to do in the next couple of days. This gets her mind thinking about something else and usually helps a little. She is extremely intelligent and knows everything that is going on. She loves to think about people. You all are very important to her. She doesn't feel good about herself right now so any kind of encouragement is great. She, like all of us, needs loving words that will build up her self esteem. She also needs to do things for others. She needs to know that she can love and make a difference for others. Gina and Duke need more attention as we have been spending way more time thinking about Kami. As for Francois and I, we need more sleep. I'm doing too much yelling, he is doing too much worrying. We pray for peace.
We send love to all of you and thank you for reading this and taking part in our family journey.
Peace to you all.
The Nguyen Family
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