Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 6
Fall 2003
First Grade
Back to School
The greatest thing ever was seeing Kami walk to her classroom on the first day of school. She walked up the sidewalk with all the other students, she walked up the stairs to go in the front door, and she walked into her first grade classroom ready to learn. It was a miracle that everyone witnessed!
It was wonderful to have everyone back in school. Duke moved up from toddlers to preschool at his daycare. Kami went from Kindergarten to a first and second grade combined classroom. Gina moved from her combination first and second grade classroom to a third and fourth grade combined room. We were very happy about all their teachers this year. It was interesting about Kami’s situation. We really would have been happy with any of the four first and second grade rooms for her. However, there was one first and second grade teacher, Laurie, who went out of her way to make a special connection with Kami. While Kami was in Kindergarten, Laurie would come by often to see how she was doing. Many teachers were extra nice to Kami, but there was something extra special about Laurie and Kami’s relationship.
We hoped they would put Kami in Laurie’s class, but there was a lot of switching of teachers that year so we weren’t sure. They moved Laurie over to be with a teacher named Ben. Ben had been one of Gina’s teachers the previous two years and we liked him very much. We were happy Laurie and Ben were together, but we were worried about the classroom. It had a small doorway connecting the two rooms and we weren’t sure Kami’s wheelchair would fit through the doorway. We actually measured Kami’s wheelchair and it just barely fit. We were worried they wouldn’t put Kami in that classroom because of the doorway. When the letter came at the end of the summer announcing the teachers and classmates for that year, I cried because Kami did get Laurie and Ben. I was so happy. It was funny that she would be in Gina’s old classroom. We were also happy that some of Kami’s best friends, including Marley and Maddie, from Kindergarten were put in the same class with her. Because the class was a first and second grade combined class, the second graders that year had been first graders the year before with Gina. So the kids and their families had been going through the cancer battle with us already.
We were also very happy about Gina’s teachers. Any of the classes would have been fine for Gina, but we were especially happy about the one she was put into. Both of Gina’s teachers, Hilary and Bob, had special connections with John and Cynthia. John and Cynthia’s youngest son, Michael had gone to this school, so John and Cynthia knew everyone there and they were very good friends with these teachers in particular. It seemed like a very small town and a small school community with these special connections. We had heard very good things about all the kids’ teachers and were looking forward to a very good year for them.
Francois was still in charge of Duke. The girls and I went off early to school everyday and Francois had to get Duke ready and drop him off at daycare. Duke had new teachers who were very nice, but we thought it would be hard for him to be in a new classroom. His daycare was so great that he was able to make the transition easily and loved going every morning.
This year I was able to leave Kami in her classroom by herself. This was a huge step for Kami. She loved her independence. It was a quantum leap for me to say goodbye to her at the door and be on my way. It was still good for me to stay in the building, at least at first, just to make sure everything was really alright.
Over the summer we found the need to get a second cell phone for the family. Now at school, Kami had one phone and I had the other. That way if she needed anything, she could call me from wherever she was and I would be able to go to her immediately. This may sound extreme, but it was actually extremely convenient. If she needed to go to the bathroom, for instance, I could go and help her. If she needed something to eat or drink, I could get it for her. If she wasn’t feeling well, I could be there right away. Kami had special needs that we felt would have been inconvenient for the teachers to help her with. Kami did not abuse her cell phone privileges. On the contrary, she called me only when she needed me and we were able to solve her issues quickly so she could get right back to class. Sometimes Kami would have a little head ache or stomach ache that a little drink or a snack would solve. With my being able to get that for her, she didn’t have to miss school. If she felt very bad, I would be right there to take her home. Usually, however, she didn’t feel very bad, a little drink or snack usually perked her right back up. Kami’s classmates understood that she was taking strong medicines that made her feel bad sometimes. They did not get jealous if Kami got an extra snack because that way Kami was able to come back to class and participate. They all respected Kami for what she was going through. In turn, Kami respected her classmates and tried to do everything she could to fit in and be a normal kid.
I didn’t want to stay in Kami’s classroom more than I needed to. Kami’s condition was not stable enough, however, for me to leave her completely. I was not able to go back to work. I was invited to help out in the school library as much as I wanted to. Since the library assistant was gone that year, there was a lot to keep me busy. I got to learn all about the library computer system and all the ins and outs of the school’s library program. I had gotten my Master’s degree in Library Media and had been a librarian myself, so this was wonderful for me. Our house was completed, so I didn’t have that to do anymore. Working in the school library was a perfect solution for me because it gave me something to do that I loved, yet I had the freedom to leave whenever I needed to help Kami.
I loved working in the library. The librarian, Margaret, allowed me to help her make some big changes. I started by doing a lot of weeding of old and outdated books. After weeding, we rearranged many of the shelves with the goal of getting rid of one whole book case and rearranging the others so the library would become handicap accessible. This was a huge job. When it was completed, we were so proud, Even though Kami did not need her wheelchair anymore, we felt we had done a very good thing. After rearranging the shelves, I put picture labels on them so it would be easier to find things. Then there was the general maintenance of cataloging, barcoding, and labeling books, as well as checking books in and out and shelving. There was always so much to be done, I could escape to the library and not think so much about cancer. Even though Kami seemed much better, I knew there was a long way to go.
Getting back to school was such a joy for everyone. We tried to do fun activities around the house too. Kami’s cooking abilities were blossoming. We wrote down her recipes, took photos of her dishes, and video taped little segments of “Kami’s Cooking Show”. It became her greatest dream to have her own cooking show when she grew up. She discovered the food channel over the summer and became addicted to it. Emeril was her favorite and she loved watching Iron Chef too. The best we could do for her in terms of having her own cooking show, was to put a section on our website called “Cooking with Kami” with photos and recipes. Kami always cooked very unusual dishes and always had special ingredients. She loved being creative with cooking.
Gina had always been very creative with her art. Gina had always been a good artist ever since she learned how to hold a pencil. Gina’s art started expressing some things she was going through. The first piece she brought home that really hit me was her picture entitled “Heartbroken”. She painted this picture in school when she was in first grade when Kami was first diagnosed with cancer. The assignment was to paint a face in the style of Picasso. Gina said she tried to paint a girl with a monocle on one eye. The result was that the girl looked like she was crying. There were other things in the painting that must have come out subconsciously as well. I thought it was a masterpiece. I wanted to make journals with this picture on the cover and sell them. I thought this picture would inspire people to write down their feelings. Gina brought home other works of art when she was in second grade. She drew a lot at home as well. She liked to do pictures with suns and moons. She liked to draw girls wearing Asian dresses. She also had the patience to draw beautiful still lifes. When I saw her picture of the two cats hanging in a special place at school, I thought, “That’s it, I have to do something about this!”
The kids’ favorite website had an online shop. I really liked the layout of this shop. I decided to sign up for a shop of our own. Gina and I had so much fun designing this shop. We uploaded Gina’s artwork and designed all the products ourselves. We called it “Gifts by Gina” and she was on her way to becoming a young business woman. We announced the site at the end of the summer and sold lots of gifts throughout the school year.
Tumor Growth
Just when everything seemed to be going so well, bad things started happening to Kami. One day I noticed Kami couldn’t smile as well on one side of her face. It was very subtle and I didn’t want to think it was anything to worry about, but of course I did start to worry. About the same time, Kami started asking to have the TV turned up. This could have been because Duke was making too much noise or because the water was running in the kitchen when we made dinner. She wouldn’t need it turned up all the time, just sometimes. In class Laurie and Ben started noticing that Kami was having problems hearing.
Kami had been continuing to take the chemo VP16 with regular check ups. The third week of school she went in to get her counts done and everything was fine. By the fourth week of school, we started noticing these things about her hearing and her smile. The fifth week of school we went in for counts again and told Dr. Moertel about our new concerns. He got Kami in right away that day to have her hearing checked. She had completely lost hearing in her right ear! How could this have happened so quickly?! Move into action: Dr. Moertel notified Kami’s radiation doctor, Dr. Farniac, of the problems and we were scheduled to see her the next week. Dr. Moertel also got an MRI scheduled and told us Kami would probably need to stop her chemo and start whole brain radiation right away! Shock!!!
Just when everything seemed to be going so well! We didn’t think those small tumors above and below her main tumor were a real threat. We thought they were so small. We thought they were growing so slowly. Her symptoms didn’t seem that bad as to warrant whole brain radiation! We started reading things about whole brain radiation and they were not good. We started researching alternative therapies for the brain stem. That’s where these tumors were. They were in her brain stem. We didn’t want to tell anybody that because the brain stem is the hardest part of the brain to get to. We didn’t want to worry people. We didn’t want to worry the kids. We didn’t want to accept it ourselves. Kami’s cancer was so horrible because it was inside her nerves. It started inside her spinal cord in her upper back and traveled up her neck into the nerves inside her brain stem. It affected her hearing first, then the muscles on the right side of her face, including her smile and her eyelid. She was unable to completely close her right eyelid, so at night she needed to wear a patch to cover her eye. It also started to affect her vision in her right eye, so she started seeing double with both eyes open. She had to start wearing a patch over her eye during the day too, so she wouldn’t see double. Her walking became more unstable because she could only hear out of one ear and see out of one eye. This all happened so quickly, all in just a few weeks!
Those weeks were the worst for me emotionally. Kami’s tumor pain the first summer was unbearable for me to witness. Seeing Kami suffer daily that next spring with vomiting and not eating was almost worse because it went on for so long. But the most difficult reality I had ever faced, was the fear that my daughter would loose her ability to walk, to hear, and to see all at the same time. It was possible that this cancer would spread quickly to other areas in her brain stem and she would lose her hearing in both ears and maybe even loose her sight completely. It was possible, even probable, that this could happen in the next couple of weeks! What would we do? How could we deal with this?!
Up to this point we had been the super family able to deal with anything. We flew to New York for surgery that stopped the main tumor in its tracks. We did radiation in her upper back and lots of chemo to shrink the main tumor which enabled her to walk again. We went to a school that supported her every learning need. We moved into a new house so she could get around by herself. But this new reality was too much! Would she be able to go to her school anymore? Would she be able to be with her friends and teachers she loved so much? How would she communicate? Would she have to learn sign language? Would we all have to learn sign language? And then what? What if she also lost her sight? Would she be plunged into darkness and silence? The brain stem also controlled swallowing. Would she be unable to swallow and would we have to feed her through her G-tube? How would she deal with all this? How could one little girl suffer so incredibly much?! Would she even want to live anymore? Would the cancer spread and eventually kill her? How much would she have to suffer? Why wasn’t there a cure for cancer?!!!
We lived moment by moment. We had to go on, one moment at a time. We had to persevere for the kids. We had to do what ever we could for Kami. I looked online for a deaf school in our community. I found one, but I just couldn’t think about that. I could not think about making her switch schools. I wouldn’t! This was too much! I was able to suck up all my feelings when I was around people. I was able to put on my strong face. It amazes me how calm I seemed on the website news updates. I probably always seemed very calm to everyone on the outside. Those who looked closely saw my tears and my pain. Even though I told the kids everything that was going on, and even though they saw me cry and yell often, I did not show them the extent of my feelings. They thought I was crazy and got angry a lot, but I never showed them my fear. I didn’t want them to get scared. I didn’t want Kami to get scared. I believed, just like the father in the movie “Life is Beautiful,” that children should not suffer the effects of the holocaust. Like the movie, I tried to distract the children with games and stories. I didn’t want them to know what was really happening. I didn’t want anyone to know what was really happening.
Friday, September 26, 2003
We have been blessed with miracles. We have been blessed with three beautiful children, a wonderful family, and many other things. However, we are witnessing the effects of random chaos that hit our Kami with this horrific disease. Statistics were against Kami making it past the first six months, yet she is here! It was doubtful that Kami would ever walk again, yet she is walking!
With this in mind, we must now face the next phase that we have been dreading. Kami has small tumors above her main tumor that have been growing. Now we are noticing some symptoms having to do with those tumors.
We need to switch chemo medicines again. We need to look at the possibility of radiation again. Surgery is not an option. We may need to get back on decadron to help relieve some of the symptoms. We have extremely tough decisions to make in the next few weeks.
We got Kami's body brace fitted for her scoliosis and will try to get her to wear it as much as we can. At this point, it is hard to focus on the scoliosis.
Kami continues to amaze us with her positive attitude and her will to push her life forward. We need to focus on each day and try to make life fun for our kids.
We hope you all will be patient with us as we need a few weeks to figure out the next steps.
We will keep you posted as we know what is happening.
The Nguyen Family
September 2003
Page 19