Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 3
Fall 2002
Kindergarten
The First Weeks
When I think back to those first weeks of school, the image that stands out most in my mind are the big blue eyes of the dark haired girl sitting across the table from Kami. Kami was always a very social person and her major concern starting at a new school was who her friends were going to be. She already knew some of her classmates from preschool. The one she really wanted to be with was her friend Hazen who unfortunately got put in the other Kindergarten class. Kami’s first assessment of the girls in her class was that they were a bunch of wild blonde girls who were only interested in fooling around. It took Kami a while to notice the quiet, smart, dark haired girl with the big blue eyes sitting right across from her. Her name was Marley. I noticed Marley right away and watched as she slowly and quietly made her way deep into Kami’s heart.
Even though Kami’s main concern was friends and how everyone would react to her being in a wheelchair, my main concern was that we had chemo treatments that first week of school and an MRI coming up the next week. That first week, we had to leave school after lunch everyday and go over to the clinic for a few hours of chemo. This was Kami’s third round of Irinotecan. She handled this chemo with no side affects, so she was able to handle going to the clinic and going to school everyday. This was the amazing thing about Kami. I did not force her to go to school. In fact, I would have rather she stayed home on her chemo days, but Kami would hear nothing of those suggestions. She was focused on what was happening at school and chemo to her was just something she had to do in her spare time. When we went to the clinic she brought lots of stuff to keep her busy and distracted. Then it was time to go home for dinner and relax. Kami got ready for bed early so she could get up early for school the next day. She was in charge of her schedule. She started calling all the shots. I was exhausted from her busy schedule. She just kept going.
Before I get into all the wonderful aspects of Kami’s Kindergarten class, I want to talk about some of the difficult moments at school in the beginning. Having a big wheelchair in an already crowded classroom was a challenge. Kami’s teachers, Molly and Jayne, had a “not a problem” attitude which helped everything tremendously. They spoke to the class about how to deal with the wheelchair and made accommodations so Kami could get everywhere she needed to go. Even with this preparation and acceptance, there were so many little things that happened that were difficult. One thing was that it was hard making Kami feel part of the group. When everyone sat on the floor in a circle, Kami was up higher in her chair and felt separated. When everyone stood up for a stretch, Kami felt bad that she couldn’t stand up. When everyone went outside to run around, Kami felt very uncomfortable not knowing what to do. Another hard thing was how people acted around her. Very often people bumped her chair. Kindergarteners bump into each other all the time and it is very natural. They had to unlearn this habit and be very careful not to bump Kami’s chair. Kami was on decadron which made her very sensitive and moody. If someone did something or said something offensive to her, even if they didn’t know it was offensive to her, she would get upset. In our family we learned how to respect Kami’s feelings and considered her behavior normal. Her classmates had to get used to how she was, which took a while. The best thing about Kami’s personality at school was that she was incredibly smart and very funny. Overall, it didn’t take her classmates long to appreciate Kami and start accepting her as a regular friend.
Picture day happened one of the first days of school. I had a wall in the girls’ bedroom devoted to school pictures. Every year I proudly displayed their beautiful photographs and admired how they were growing up. It was devastating for me to realize how different she looked now from last year’s photo. Kami’s face was bloated and her cheeks were very red. Her hair had been falling out and was extremely thinned. For the class picture she was so big in her wheelchair, she had to be put on the end of the front row. Luckily someone put another child next to her so she didn’t look so separated from the group. It was a very stressful day for me. Looking back, I think how silly it was for me to be stressed about how she looked. I should have been thankful at how brave she was to not care how she looked. Kami thought she looked beautiful, and she was so beautiful.
As was the case for two whole years, I didn’t have any time to dwell on that, because it was on to the next thing. Her MRI was the next day. She had to wake up at six in the morning, not have anything to eat or drink (which was always so hard for her being on decadron), and go over to Radiology for her at least two hour scan. She had to be sedated for her MRIs because they lasted so long and she had to be perfectly still the whole time. She did great as usual. On MRI days, since she was sedated, I insisted that she stay home the rest of the day, but this was a chemo day, so it was out to lunch, then to the clinic for chemo. The next day at chemo, Dr. Moertel took Francois and me into a special room to talk about the MRI results. When he took us into a special room, it meant bad news. In this case he had to tell us that even though this chemo had somewhat stabilized her main tumor, it wasn’t doing enough and we would have to try other things. I remember realizing on this day that we had a very long way to go and that Kami would be on chemo this whole school year and longer.
At home we had immediate problems to deal with. Kami was getting very heavy and carrying her was becoming very difficult. By the time school started she was up to almost 90 pounds. In order to get her into the house, we had to carry her from the car up the three stairs into the entryway, then up the ten stairs up to the first floor of our split level house. We had a special chair with wheels for her in the house so it was easy to wheel her from place to place once she was up on the first floor. She could walk for short distances holding on to our hands which was good, but she couldn’t do stairs at all. She was very sensitive about who carried her up the stairs, especially when she had her port accessed with a needle and a line hanging out of her chest. I could understand this because Papa was not very careful (maybe on purpose) when he carried her. Papa carried her as often as she would let him, but I ended up doing it 90% of the time. I started feeling pain in my knees going up the stairs. We had talked about getting a stair lift, and now we really needed one.
Francois took care of calling all the medical people. It was better for him to do it, because I would loose my temper too fast and not get anything accomplished. It took more than two months of constant calling and paper work to finally get that stair lift. I had been carrying Kami up the stairs since April, now it was causing me pain and they still wouldn’t give it to us. I had to do it everyday in pain. I had no choice, so I just did it. A lot of resentment built up in me in that sort of situation. Health care is very unpredictable. Sometimes we got stuff right away, sometimes it took forever. Eventually we figured out every time we got something right away it was because Dr. Moertel wanted it. We didn’t always get something that benefited the parents. On one hand, it is understandable because a stair lift didn’t effect Kami’s direct physical well being as a cancer patient. On the other hand, how was she supposed to get out of her house and go to treatment? Didn’t we have laws in this country regarding physically handicapped people and didn’t those laws apply to children? Everyone just expected the parents to carry Kami because she was a child. No one cared about how much she weighed or how often we had to carry her. I should have gone on strike and not taken her anywhere. We should have hired a lawyer to help us. We were too stressed to do that. I just did what was easiest and best for Kami, so I carried her everyday.
I didn’t have any time to dwell on injustices that I couldn’t control. We had busy evenings and I wanted to spend any free moment I had with Duke. Duke was only two years old. He was a year and a half when Kami was diagnosed and had spent the past six month of his life watching his family live in crisis. People always forgot about Duke. Francois drove him to and from daycare everyday and basically took care of everything else for him while I was taking care of Kami. Gina had to take care of herself. She was in second grade. How this all was affecting Gina and Duke, we didn’t know. We just went day by stressful day. We were all in this together.
Friday, September 6th, 2002
Kami's MRI was very much like the last one which means things are somewhat stable. The main tumor doesn't seem to have grown, but it hasn't started to shrink either. Irinotecan is stopping growth, but we need to find a different drug or combination of drugs to start getting rid of that monstrous tumor. Unlike brain tumors, there are not drugs out there that have had any success with spinal cord tumors. That is the sad news. The small tumors above and below the main tumor do not seem to have grown and there are no new ones, so that is good. There is still quite a bit of swelling around the main tumor which causes pain. We've been trying to get Kami off of the steroid decadron, but we can't do it yet because she is still having pain. Kami continues to gain weight due to the decadron. The last few weeks she has been doing a fantastic job of changing her eating habits and trying to ride her bike as much as she can, but she continues to gain. People keep telling us as soon as she's off the decadron, her weight will go down, but we are not there yet. We are realizing we need to make our house more accessible. We are asking for donations to help us do this.
We are thankful for so many miracles and hope for more. We are thankful Kami is doing well, and we hope we can find a drug that will cure her. We wish all our children well as they continue to travel on their incredible journeys.
The Nguyen Family
Private School
The decision to send Kami to a private school where there had never been a student in a wheelchair before was a very tough one. On one hand, the decision was made for us with Kami’s acceptance letter to the school. That letter, however, was sent out before they knew of Kami’s condition. We took time to very seriously consider sending Kami to our local public school.
There were problems with our local public school. The main problem was the reaction I got from the head of the district department of special education. He told me that children don’t learn much in Kindergarten anyway. All they really do is play and take naps, so I might as well keep Kami at home. I was appalled and outraged and felt this man should be fired from his job! That attitude from the top turned me off from the district completely. Another problem was that the Kindergarten rooms in our local elementary school were not handicap accessible so Kami would have to go to a different elementary school on the other side of town. Would the public school system even be able to deal with all of Kami’s special needs? I was not sure of that. What about Gina? Would I separate the girls? Would I have Gina switch schools? Gina had had a wonderful, very successful time at private school. I had much better experiences in this private school than at any public school I had worked at. I had worked at over five different elementary schools, one of which handled all the special education students in a different district.
We decided to keep the girls together and send Kami to the private school. We had no idea what we were getting into and neither did they. We really liked the school. We liked the teachers, the administrators, the families, and everything else about the school. We took a leap of faith.
Private school was expensive. My goal as a wife and mother was always to work to cover the costs of daycare and school for the kids while Francois paid for everything else. At first I thought I would stay home with the kids until they started Kindergarten. After the first year staying home with Gina and experiencing the isolation, I decided that putting the kids in daycare and going back to work was better for all of us. I went back to work and worked in education. I had been working in education for almost 10 years including being an elementary school librarian, a computer teacher, and computer technician. I had been successful in covering the daycare and private school costs of our three children up to this point. I was very proud that I had been able to put three children through a wonderful daycare and preschool program and was on my way to paying for private school as well. I was making a good salary and working my way up in the media technology field. I was very good at the jobs I had had and saw a good career future for myself in media technology. Then Kami got cancer.
Because of her handicap caused by cancer, Kami needed round the clock assistance. We asked the private school to provide an assistant for Kami during school so I could go back to work. The school was not willing to provide that. We tried to get an assistant for Kami through the medical system and public school system. We got the run around of passing the buck and no one taking responsibility. Since it was our decision to send Kami to a private school, I had to quit my job so I could assist Kami in the classroom. It was a devastating blow for us to loose my income. Luckily the school came through with financial aid for us which dramatically reduced the girls’ tuition. We still had to pay for some of it, plus we had expensive daycare for Duke. We made our choice. We struggled, but luckily it turned out to be the best choice ever.
The Magic of Kindergarten
The best word to describe Kami’s Kindergarten class was magical. The best descriptions of Kami’s teachers were fairy godmothers. Molly and Jayne team taught Kami’s Kindergarten class. They worked together brilliantly. They each acknowledged the strengths of the other and let each other express their passions for teaching and learning. I have worked in many classrooms in many schools and have never met two better teachers than Molly and Jayne. They had a lot of experience and absolutely loved what they were doing. They respected each other and didn’t try to control each other. Sometimes they divided up duties, sometimes they did things together. It felt like a well run family. I felt the secret to this school’s success was having two teachers per classroom. If families run better with two parents than it makes sense for classrooms to run better with two teachers. It does cost more money, but in the long run it is worth it.
The Kindergarten room felt so homey and inviting. It was decorated all over with so much interesting stuff! Everything seemed handmade, not store bought, which gave the room its character and flair. The children had large tables to sit at instead of desks. There was a beautiful big rug in one section of the room for group time. I had never seen anything quite like this rug. It was a pond with lily pads, stepping stones, and orange Japanese goldfish! The teachers each had a special rocking chair at one end of the “pond” and the children loved to sit on the pond rug and listen to what these fascinating women had to say. Molly and Jayne always spoke to the children with quiet voices. At first I wondered how they would be able to discipline if they weren’t using loud teacher voices like what I was used to. I soon discovered that the children wanted to hear what they were saying and immediately quieted down when they saw that they were talking and listened intently. Of course Molly and Jayne always had the most interesting things in the world to say. They spoke to the children as if they were very smart people and could comprehend very complex subjects. This technique worked beautifully and the children all learned an incredible amount. I learned an incredible amount too.
They started off the year with a unit about chickens and other barnyard animals. When they said chickens, they meant chickens! All kinds of chickens! I never knew there were so many different breeds of chickens. I enjoyed myself completely in their class. I learned so much about so many interesting subjects! That first month we learned about chickens, eggs, cows, ice cream cones, the class treasure box, Simon Rodia’s Watts Tower, and my favorite, the artist of the month. That month there were two artists, Marc Chagall and Carl Faberge. They chose Chagall for his love of painting barn yard animals, and Faberge for his eggs. I never knew anything about Faberge Eggs and learned all about their fascinating history and beauty. A year later Kami remembered about these eggs and made her own egg out of clay and put jewels all over it. She was so proud of this special treasure.
The projects in Kindergarten were always glorious. They painted huge chickens from a breed of their choice, huge eggs with glitter, huge cows with crazy designs on them, and huge pastel pictures in the style of Chagall. They learned about the invention of the ice cream cone and made a huge chart of everyone’s favorite flavors. They even visited a farm where they saw barnyard animals including chickens and learned how to make butter. This was only the month on September! Each month was a whirlwind of activities and new worlds to discover.
After the first few weeks of experiencing this incredible Kindergarten class, I decided I had to do something and take action. I wanted to show others what Kami and I were experiencing. I decided to start making a class website. Website creation had been my hobby for many years. As a family, we loved taking lots of photos of our kids. In fact, a big project I accomplished when I was pregnant with Duke, was selecting 1000 of my favorite family photos from the last 10 years and sending them away to be scanned onto CDs. It was wonderful to have these digital photos and from then on I always got a CD when I took my pictures in to be developed. I wanted to buy a digital camera, but they were never good enough and always too expensive. I had been watching for the Sony CD Mavica camera to get up to 4 megapixles before I would buy one. It finally did that spring of Kami’s diagnosis. After Kami’s diagnosis I realized now was the time to spend the money, and I rushed out to get one as soon as we returned from New York. I brought this camera with me to Kami’s Kindergarten class everyday. I wanted to take pictures of the important things Kami was doing. I had started doing a family website when we got back from New York, so it was the next logical step to make a website for Kami’s class. I had done websites for Gina’s Kindergarten and first grade classrooms, so I thought I would try it again with Kami’s class. There was a lot of time at school when the students were working on things at their tables in which I didn’t need to help Kami. I needed something to do. I sat in the back of the room at the teachers’ computer, close enough so if Kami needed me I was right there, and started doing my own thing. I was able to keep up with my email, do cancer research on the Internet, do my family website, and work on the class website. It turned out to be a perfect arrangement.
Monday, September 23rd, 2002
School is a magical place. The kids are transported into a world of themed projects, group activities, nurturing adults, interesting children, and wonderful lunches! They are doing so well, we are so proud of them.
Kami is adding some chemo drugs to her protocol. Along with her regular one week on two weeks off of Irinotecan, she is adding Lomustine and Vincristine. So far she is handling the side effects well. This is a six week protocol so she won't be getting another MRI until the end of October. We have been able to decrease her steroid decadron to a lower dose and her pain seems to be more under control. Her mood swings are still very unpredictable and difficult to deal with, but at least she is not in much pain.
We are working hard to get a stair lift in the house and some chairs Kami can feel comfortable in at school. We are trying to get Kami to exercise more on her bike and walk more with her walker. Gina and Duke are doing well, but continue to suffer from getting less attention than they should. It is a difficult time for us all. We've been through so much for so long and continue to be challenged. We don't know what will happen. We try to keep our spirits up and enjoy the changing of the season.
Best wishes to you all,
The Nguyen Family
September 2002
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