Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 4
Winter and Spring 2003
A Miracle
The day after New Years, Kami had her MRI. Miracles do happen and her MRI results were definitely a miracle! The radiologist’s report from the MRI came back very good. Dr. Moertel must have gone back on vacation because he could not meet with us until the next week to confirm the radiologist’s report. The radiologists report said that things may be stable, even slightly better. We had never heard that before! We were ecstatic! We celebrated by having one of Kami’s teachers over for dinner one night and going out for brunch with her other teacher the next day. We were so grateful to her teachers for helping Kami so much. We knew we were no where near out of the woods, but this was the first time we had had good news from an MRI. It had been a very stressful vacation for us. We were so glad to get back to school. The long hospital stay was not my idea of a fun way to spend winter break. The good news from the MRI made it worth it.
Saturday, January 4th, 2003
Good News! We have not talked to Kami's primary doctor yet about the significance of her latest MRI, but according to the radiologist's report, things may be stable, and even slightly better! After nine months of bad news and constant worry, it is hard to believe that this could be true.
There is a story to getting Kami's latest MRI that is a little bit like how Dobby tried to stop Harry Potter from going to Hogwarts. Suddenly, a few days before Kami's MRI, we got a message saying that the MRI was not in the computer, so it had to be rescheduled for a week later. We were so anxious about the scan that we called a few people to see if we could still go on the original day. Somehow they fit us in and we were on again for the original day.
Kami had been doing so well the past few weeks that we were able to get her completely off of the steroid decadron. As expected, she completely lost her appetite and stopped eating and drinking. This went on for many days and we started to worry. When Kami went in for her routine exam the day before her MRI, she had very low energy and it was suggested to have her stay in the hospital overnight to receive some fluids and just make sure everything was alright before she had sedation for the MRI the next day. When she awoke the next morning, her breathing was not right and she had to stay in the hospital. It was not safe to sedate her for the MRI. She had gotten fluid in her lungs. She was put on antibiotics and steroids again to get her through this. She did many tests to try to determine what was wrong. They didn't find anything and she got better in a few days.
It seemed very difficult to reschedule the MRI. We were very anxious to know the results. The results would determine Kami's next course of treatment and we have been very worried about what that might be. Suddenly everything fell into place. Kami woke up one morning feeling much better, they were able to get all the pieces in place to get the MRI done, and we were sent home with good news.
So that is how we spent our winter vacation. Duke was sent to daycare, Gina was sent to friends’ houses. Kami says she enjoyed herself at the hospital. We managed well thanks to the support of our loved ones. And we think the result is a miracle!
Blessings to you all,
The Nguyen Family
Nausea
Because of the good results from the MRI, we were able to continue Kami’s VP16 chemo protocol which was very good news for us. We didn’t have to think about the scary possibilities of a phase 1 experimental chemo yet. VP16 looked very promising. We could tell Kami was improving. Her pain was definitely less. When we lowered her decadron, she didn’t have any pain and that was wonderful. It was so hard for her in terms of not eating or drinking. It seemed inhumane when she would go for days and days without even a bite of food and hardly a drop of liquid. Even though she was over weight, we couldn’t bear to see her loose weight this way. We didn’t want to just continue giving Kami decadron if she wasn’t having pain. We really wanted to work to get her off steroids. We were told it took a while before the body would adjust and start making its own hormones again. We had no idea what a hard struggle that would turn out to be.
The trouble was, without decadron, not only would she not eat or drink, she would throw up. The biggest problem about throwing up was that if she threw up right after we gave her her chemo, then she wouldn’t have chemo for the day. Not to mention that she would have the chemo on her clothes and elsewhere. We soon learned to have a bucket right next to her whenever she took her chemo. We would come at her with her chemo and her throw up bucket. I became so worried that I wrote down on my calendar exactly what and how much she ate and drank, and whether or not she threw up. It was a very sad and frustrating situation. At first, we were told to try to ride it out. For a while she wouldn’t throw up her medicine if she hadn’t eaten for the day. After three or so days of this I would beg her to eat only to have her throw it up.
The Accutane pills were the hardest part. We would use her favorite juice, grapefruit juice, to get her to take them. Even though grapefruit juice was very acidic, that was the only juice she wanted to drink. Grapefruit juice was her favorite so she wanted to drink it, but now that she was throwing up, she started to associate grapefruit juice with throwing up. We tried other drinks, but those didn’t work either. Every time she tried to swallow the pills, she would throw them up. It was weird, because she had swallowed them fine for a few months. Now it was as if she had a physical reaction to them. We tried everything with the pills. We tried to break the shell of the pill and mix the goopy gel inside with different foods like applesauce, yogurt, even peanut butter. We tried to dissolve the gel in hot liquids, but that didn’t work either. It got to the point where she would start gagging if she saw it coming. It didn’t matter how much we tried to disguise it or what time of day we tried to give it to her, she would somehow know it was coming. I think this was what was called anticipatory nausea. There was not really anything that could be done about it.
After about two weeks of this we started trying various antinausea medicines. We even tried a mild sedative, but that didn’t work. After three weeks, I gave up and gave her decadron again. Dr. Moertel’s nurse Kathy was very helpful to us at this time. She helped us decide to give Kami a break from the pills for the month. We thought that we’d give her a break, get her back on decadron, get her appetite going again, and try the pills again after about a month. When we got her back on decadron, her appetite came back and at least she was able to take the VP16 liquid chemo.
Physical Improvements
Things were going along fine at school. Kami didn’t eat day after day, but she still had the energy to participate fully in all the school activities. In January the class studied Antarctica. The class learned about two explorers, Earnest Shackleton and Ann Bancroft. They learned about penguins and a famous photographer, Stuart Klipper. They did projects about snow, igloos, mittens, and snowmen. They celebrated Martin Luther King Jr. day with a “dream” project. The best part of the month was learning about the artist, Henri Matisse. The Matisse unit was one of the highlights of the year. They made huge wall murals in the style of three of Matisse’s famous works. They made cut paper books, hats, stamping projects, and portraits. They learned a song about Matisse and sang it all the time. They even had a “Matisse Day” where they had many stations with Matisse oriented activities. One day months later, we took the kids to the Institute of Art. We were so proud of Kami when she shouted from across the room, “Look there’s a Matisse!”
Physically Kami was doing very well. They had gotten a dog sled to display in the classroom. Her teachers wanted Kami to try it. We got her on the sled and the kids wanted to be the dogs and pull her up and down the hall. They had so much fun that everyone had to have a turn.
Kami was starting to loose a little weight and feeling better physically. One day the school had a “Jump Rope for Heart” jumpathon after school. It was for second through fifth graders. Even though Kami’s class wasn’t in it, Kami wanted to go and support Gina. When we got there, Kami assessed the situation. Mr. T., the PE teacher, was using a microphone to talk to the kids over the loud music that was playing. Kami wanted to do that. I wheeled her over and she asked Mr. T. if she could do one of the announcements. Before long, she was doing all the announcements. She was having the time of her life. Near the end of the program she even volunteered to hold one end of a giant rope and swung it around so three or so kids at a time could jump through. I couldn’t believe she could do that. That took a lot of strength!
Working on the New House
About once a week I left Kami at school in the mornings to go choose things for our new house. After that first time, I never had a problem leaving her at school. Even if I was late for lunch, someone else would help Kami and she was fine. Kami felt proud of herself that she could be fine without me. I think her being on less decadron had something to do with this mood change. I felt very relieved that I could finally leave her and know she would be fine. On many days, I would leave her and go help out upstairs in the library. Sometimes I just used the library couch to rest on. I still wanted to be in the building. Both Kami and I felt more comfortable when I was in the building and the school wanted me to be there too.
The new house was going well. It gave me something to think about that was enjoyable. It distracted me away from my worries and gave me hope for the future. Before we moved into our current house, I loved looking at different houses and dreamed about different designs. My mother was an interior designer and I got a lot of inspiration from what she did. Francois and I bought our current house when I was pregnant with Kami. We loved the house and thought we would live there forever. It was a great house in a beautiful neighborhood and was big enough for the kids to grow up in. It was extremely difficult for me to think that we would have to move. Fortunately, our new house was very near by and was going to be just as beautiful. Most importantly it would be handicap accessible and we needed that right now. My style was to look at every magazine and spend hours and hours looking at the different possibilities before I chose something. Now I did not have any time to do that. I had to trust my instincts. I had to trust what I had learned before. I only had a few short hours at each showroom and had to make my choices right there. It was amazing to me that I was able to do this. I think because I was in crisis mode, I was able to make quick and good decisions.
The house was going along well. That was, until it came to the plumbing fixtures. Because bathrooms and kitchens are the places most affected by accessibility issues, the plumbing person would not meet with us until we had consulted with an accessibility designer. She recommended someone, so that was the person I called. Perhaps I should have given this more thought and maybe tried to find my own designer, but I just did what was easiest.
We talked with one of our social workers who had helped in getting us the stair lift and who had been trying to help make our house more accessible. She was happy to hear about our decision to build a new house. Making new construction accessible was easier than converting an existing home. She and the designer spoke and it seemed they had come to an agreement. It was our understanding that the designer would get everything approved first by our social worker before she did anything.
The designer seemed very good at first. She seemed to know all the issues and would work hard for us to accomplish our goals. After the first few meetings, however, I sensed something was wrong. She kept coming up with different suggestions and started pushing me in directions I didn’t want to go. One example was the shower. We had one bathroom on the main floor in our new house that would serve as the main bathroom in the house and the bathroom for the master bedroom. Until the kids were grown and able to sleep downstairs, all five of us would be sharing this one bathroom. The designer kept insisting that the shower be completely open to the toilet next to it using a curtain for privacy. I didn’t like this idea because water would get all over the floor when someone was taking a shower and the floor around the toilet would be wet. This didn’t matter to her, she thought her idea was better and she insisted on using it. I had to fight her to get what I wanted. I wasn’t an expert in this field, but I knew what was better for my family. She kept fighting with me on many ideas. Not only that, she messed up some things that I had to correct! I soon realized that she was not helping at all. I ended up dismissing her and had to take over everything myself.
The designer billed our social worker an exorbitant fee. The social worker paid her what she considered a fair amount for her services. They had made an agreement beforehand that the designer would get everything approved first. She did not do this. The designer then proceeded to sue us for the rest of her ridiculous fee! We couldn’t believe it! We were told we couldn’t pick out our plumbing fixtures until we met with a designer. As it turned out, I picked everything just fine myself. The designer actually messed some things up and now she was suing us for thousands of dollars! Did I have time to deal with this?! I was beyond angry.
It took me a while of stewing to know what to do about this lawsuit. In the end, I decided to go to the courthouse and sue her back for the minimum amount I could. She ended up dropping her suit. Thank goodness! This situation taught me a lesson I wish I never had to learn. People try to take advantage of people who are down. I can’t believe how mean some people can be. I was proud of myself for standing up to her.
Kami’s Wig
After the holidays we were really feeling the squeeze financially. It may sound silly to worry about haircuts, but I needed one and they were expensive. I hadn’t gotten a hair cut or color since Kami got sick and I was way over due. I could get by with all my same old clothes, but I didn’t feel comfortable if my hair looked terrible too. I didn’t want to look so bad that people would feel sorry for me. I put off a haircut for myself because that was money that was spent better elsewhere. Kami had lost her hair and had gotten used to wearing hats for over a month now. From the beginning we talked about Kami getting a wig, but she hadn’t needed one. Now she expressed an interest in getting one.
As we looked around for a wig, we found out they could be very expensive. Natural hair sounded better, but those were the most expensive. We went to a shop that was recommended to us. It was very far away and the wigs were very expensive. We decided to keep looking. As it turned out, the place I had been getting my haircut for years, Rita’s, had wigs and specialized in wigs for cancer patients. We made an appointment and described what we needed over the phone. Kami and I went over one afternoon after school. Rita herself saw us and had a few choices for Kami to try on. The natural hair turned out to be too heavy and we were told was harder to maintain. Rita had a perfect synthetic wig that looked exactly like what Kami’s hair used to look like. She sold it to us for a very reasonable price.
The wig was so much fun! Kami could brush it and style it on the styling head. I could brush it and style it on her. When she first wore it to school, the kids thought it was her own hair. She had been wearing a hat for a while, it looked like she just took off her hat. Kids can be so innocent. It looked so good on her and so natural. She loved her new look. Some of the older kids would pass her in the hall and wonder about her. She would just say, “I got a wig!” and roll on by. Shortly after Kami got her wig, she made me get my hair cut and colored so we would both be stylish.
Wheelchair Basketball
At the end of the month, the school had a special event celebrating diversity. They had dancing, arts & crafts, and food from many different countries. This year they also had a special group of wheelchair basketball players. Kami was very excited to see them. She tried different wheelchairs and was able to throw the ball and wheel herself around. It made her feel happy and empowered to know this kind of thing existed. We had a lot of fun that night.
Thursday, January 16, 2003
Happy New Year and Thank You for news of your families and all the connections made over the holidays!
We feel very hopeful about the latest good news about Kami's condition. Actually, we have very mixed emotions. Hearing good news after so many months of living in total crisis is hard to believe. We don't know what this news means. Even after confirmation of the radiologist's report by Kami's primary doctor, there are no certain answers about Kami's condition. Her type of cancer is so rare, nobody knows what will happen. Since we don't know, and may never know, what caused this, we don't know what may cause it to grow again. It is not over yet. In fact, we feel we are just now starting a long road ahead. We still need to work hard month by month. Kami will continue to use the current chemo medicines, VP16, Accutane, and Vioxx, for two more months then she will get another MRI scan around spring break. We hope this chemo will continue to help her improve!
What we are most thankful for is that Kami is not having tumor pain and we are helping her begin working toward a road to recovery. It has not been good for her to be on steroids for so long. It is very difficult to get off steroids. We are not guaranteed that she will make hormones on her own. We hope her body will be strong enough to do that, but it will take a number of weeks. In the meantime she has no appetite at all. Along with her not eating has come nausea. Luckily we have not had to deal with this so far, but now it is a problem. We hope she can take the medicine she needs and get her hormones to work on their own again.
We are so happy to be back at school after break. The kids love school so much. Snow or no snow, we will have a good winter.
Good Wishes to you all,
The Nguyen Family
January 2003
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