Spring Activites
Kami’s RSV cleared up very well. She used a nebulizer twice a day for a few weeks and that did the trick. She liked doing the nebulizer. It only took a few minutes and breathing in that nice medicine made her feel good. The area around her G-tube, however, continued to be a problem. It never started bleeding again, but I noticed the hole started getting a little bigger and was still irritated. We went to a GI stomach doctor and were given some cream to put on it. They also reinflated the balloon that was inside the stomach that kept it in place and that seemed to help. We kept our eyes on this problem because it irritated Kami every time I attached the tube to give her medicine. We gave her medicine every morning and every night. Kami was on her second round of three weeks on, one week off of the R115777 chemo.
Kami seemed to be doing alright. She was gaining a lot of weight. We kept up the decadron dosage to deal with pain in her lower back and occasional headaches. Eating was a source of great pleasure for Kami so we enjoyed the fact that she could enjoy something so much. Kami was able to get around great in her wheelchair. Even though we ran into lots of problems around town, we were able to go just about everywhere we wanted to go with the van and Kami in her wheelchair. One interesting thing was that we couldn’t fit in parking garages. We found this out the first time we went to the clinic. We went into the parking ramp just like always and BOOM, the roof of the van hit the ceiling. We had to back up and find a different place to park outside. This happened at the mall too. Luckily they had some handicap spaces outside because this was one of our favorite places to go.
The van was actually quite an ordeal, but just another ordeal we got used to. To get Kami in, I opened the side doors and brought the lift down. Kami drove on to the lift and the lift lifted her up. Then the hard part for Kami came when she had to drive her wheelchair in and turn it just right so she didn’t bump into anything and get right in the middle. She actually got really good at this. Then I got into the van and squeezed in behind the wheelchair to hook a strap to each corner, this was the hard part for me. I got out of the van, pressed the button to bring the lift back up and closed the doors. Getting out of the van was the same thing in reverse. I considered dealing with the wheelchair and the van my exercise for the day. It wasn’t really that complicated, it was just something that had to be done and it was time consuming. We were so thankful, however, to have the van and the electric wheelchair. They were Kami’s lifelines to the rest of the world.
Kami, just like anyone else, got bored at home. She wanted to go out and do things. One of her favorite things to do was see movies. Somehow some things happened at the right time. This was a great time for movies for young girls. The first special girl movie for us was the “Lizzie McQuire Movie” which came out the summer after Kami’s Kindergarten year. That movie was heavily advertised and the girls looked forward to it for months. When we finally got to see it, they loved it. They even went to see it twice. One day Kami had a doctor’s appointment and afterwards instead of going back to school, we went to see the movie for a third time. Kami and I were the only ones in the theater. When Hilary Duff came out on stage at the end for her big song, Kami stood up and sang and danced right along with her. She was so beautiful, I started crying. The girls loved the soundtrack and sang those songs all summer. The Amanda movie, “What a Girl Wants,” was out at the same time, and was also great. “Holes” was one of my favorite books and I was excited to take everyone to see that movie. It was so interesting, every time we went to the movies, I carried Kami all the way up to the top of the theater because those were the best seats. In the movie “Holes,” there was a part when Stanley carried Zero up to the top of the mountain. That broke a curse that had been hanging over their family for generations. After seeing that movie, every time I carried Kami all the way up the theater stairs, I tried to break the curse that was on our family. That spring Lindsey Lohan came on the scene. “Freaky Friday” was awesome, and “Drama Queen” was the best. Now that Kami was always in her wheelchair and heavy again, I couldn’t carry her up the stairs, so we had to go to the theaters at the mall where there were no stairs. Even though those theaters were smaller, we liked the convenience of them better. We saw “Drama Queen” three times, we loved it so much. Then it was time for “Ella Enchanted.” One girl movie after another! It was unbelievable.
Seizures
That spring we didn’t have any plans for spring break except to go shopping and see movies. The first movie we saw was “Cody Banks” on the first Saturday of spring break. Something happened to Kami on the way out of the theater. She was wheeling her chair out of the theater when suddenly her chair ran into the seats and she couldn’t move. Her head went back and started shaking around a little. I tried to talk to her, but her eyes were rolled back and she didn’t seem conscious. Was this a seizure? It ended pretty quickly and she was fine. It happened again later that day. It happened three times the next day. Then on Monday and Tuesday it didn’t happen at all and she was fine. On Wednesday I took the girls to the mall and it happened four times there. That was a disaster. I stayed close to her, but when it happened her hands were out of control and her chair went all around. I grabbed her hands and tried to hold her head too. As soon as it happened the first time, we turned around to go home, but it took us a while to get to the van and it kept happening on our way out. I was scared and I’m sure Gina was scared too.
The next day I took Kami to the clinic. Dr. Moertel wasn’t there, but luckily Dr. Messinger was. I described what had happened and Dr. Messinger was very concerned. It just so happened that Kami had a seizure right there while he was looking at her. Yes, he confirmed, that was a seizure. He got us an appointment for the next day with a doctor at the epilepsy clinic.
I had heard this epilepsy clinic was one of the finest in the country, but the experience Kami had there was the worst thing she ever had to go through. Before we could meet with the doctor, Kami had to have a routine EKG. We were lead to a very nice, kid friendly room and were ready to take a half hour test. The technician proceeded to put electrodes all over Kami’s head. These electrodes were copper and needed to be glued on to the scalp. Kami was practically bald, but actually had very short hairs all over her head. It looked like everything was fine. I couldn’t imagine how they did this with kids who had hair. When the technician tested the electrodes, they weren’t picking up a signal. She took a sharp object and started scraping Kami’s scalp where each electrode was. This was extremely painful and Kami wanted her to stop. I stopped the technician and questioned her about the procedure. She said this was the only way to do it. After a few more painful scrapes, I stopped her again and told her that this was inhumane and that I wanted to talk to a doctor. She called for the doctor. I talked to the doctor and he also said this was the only way to do this test. I was about to say forget it, but after further discussion it seemed very important to do this test. I explained this to Kami and she agreed to continue. She somehow got through the scraping.
After that, all she had to do was sit there for about twenty minutes. After the test was done, the electrodes had to come off. The glue that was used stuck to Kami’s little hairs and pulled them as each electrode was taken off. I was livid and yelling at the technician by this point. Wasn’t there a solvent to use? What kind of glue was this? Didn’t we live in the land of 3M? How did other patients handle this? It was horrible but there was nothing that could be done to make the procedure better. We got the electrodes off with Kami screaming and got out of there as fast as we could. Francois showed up and seeing him made Kami calm down and feel better. We met with the doctor who explained seizures to us and sent us home with seizure medicine. It was hard for us to give Kami this medicine because there seemed to be a lot of side effects. We gave her a very small dosage and luckily that took care of the seizures.
Spring Break
The second week of spring break Duke was off as well and we really needed some activities to do. We decided since we couldn’t travel anywhere, we would stay at a hotel here in town. We decided to go to the same Embassy Suites where we had Gina’s birthday party. Even though we were only going for one night, the stuff I had to take made me realize how difficult it was for us to go anywhere. I had so much stuff to pack. First of all, there were all Kami’s medicines. I had one container and Francois had to put the chemo in a second special container. Then I had to bring everything for Kami’s diaper changes. Then there were special cleaning supplies and bandages for Kami’s hole around her G-tube which was getting pretty bad. We also had to think about propping Kami up in bed when she slept so we brought a special pillow for that. Don’t forget the eye patch—in my pocket. Duke had to have his paci, blanky, and DW dolls and some special toys to play with. They all had to have some videos—what would a vacation be without videos?! We had to bring our own VCR from home because they didn’t have one in the room. And most importantly, special snacks. It was just too much! I did it though. I got all this and the kids in the van and went over to the hotel.
We got all our stuff up to the room and I thought we needed a reward so I ordered some room service. The kids loved this, room service was the greatest! When Francois got to the hotel after work, he couldn’t believe all the stuff we had and that we had ordered room service! He could have gone out and gotten food for less money. “Yes!” said the kids, so he went out for more food. We actually had a great time. We ate a lot, watched movies, went all over the hotel, watched more movies, and slept well. Kami did great and we were so happy we decided to do this. It turned out to be a special treat for everyone and something memorable for spring break.
Awake for the MRI and Losing her Grip
The kids all went back to school after spring break and Kami had an MRI scheduled for Thursday of that week. We went to the hospital to their new and beautiful MRI facility. This would be Kami’s third MRI here and we liked it much better than the old place. We got checked in and all ready to go. The sedation doctor came in and listened to Kami’s lungs before sedation. Her lungs were not good. Dr. Moertel was in the clinic that day, so he came down to discuss the situation. Dr. Moertel really wanted the MRI done. He asked Kami if she thought she could stay awake for the MRI. Kami had not been sedated for her very first MRI two years ago. She thought she could do it. I wasn’t sure she could handle it, but actually she could hardly move now anyway, maybe it wouldn’t be so bad. The bad part was that she would have to lay down flat and she always liked to be elevated so she wouldn’t get a headache. I really wasn’t sure she could do it.
Kami loved Dr. Moertel and would do anything for him. I don’t think he realized how much Kami loved him. Kami was always very sarcastic to Dr. Moertel. She would jokingly call him names and sometimes try to hit him. She would always want to watch TV instead of listen to him, and would often send us out of the room if we were talking. She always pushed him away and wanted her exams to be over quickly. She dismissed him and treated him badly, but Dr. Moertel just laughed in the face of it all. We always knew when Dr. Moertel was in the clinic because we could hear him laughing somewhere. We always felt safe when he was there. He always knew what to do. This situation was no different. He always talked directly to Kami and always made sure she was OK with all the decisions. When he came up with the idea of doing the MRI without sedation, both Kami and I thought that was a good idea. We both knew he wouldn’t ask Kami to do something unless it was absolutely necessary. He always made sure Kami was absolutely comfortable at all times so she could enjoy a good quality of life. We knew quality of life was very important to him, so we knew he wouldn’t ask this of Kami unless it was very important. By this time Kami had been through so much, an hour and a half of lying completely still with earsplitting banging noises didn’t seem so bad. Since Dr. Moertel wanted Kami to do this, she did it. She was the bravest girl in the world.
We laid her flat on the MRI table. Since the table was so narrow and since they didn’t want her to move at all, they folded big Velcro straps around her whole body. I was right there with her and kept asking, “Are you OK?” She always said “Yes.” At one point she said, “Quit asking me, just hurry up and get this over with!” They put earplugs in her ears for the noise. Actually she could only hear out of one ear. They slid her into the tube and did the scans. I stayed there and sat in a chair by her feet and read a magazine to distract myself. It seemed like it took forever! Half way through, they had to put a mask over her face to keep her head completely still. The mask was similar to her radiation mask. Since her cheeks were so puffy, it almost didn’t fit. They slid her back into the tube and her face with the mask on almost didn’t fit into the tube. More banging, it took forever again, then it was finally over. When she came out, got unstrapped and back into her chair, she said, “I deserve the biggest reward ever for that! Let’s go eat!”
The next day we got a call from the clinic saying we didn’t have to come in for the results that Dr. Moertel would just call us and talk to us over the phone. We used to always want to see the scans. We used to look at every spot and try to analyze what it was. Now we didn’t want to see all the spots on the scans. It was just as well we didn’t look at them. Dr. Moertel didn’t tell us everything that was on the scans. He focused on what we could do something about.
That week Kami had been feeling weakness in her right hand. It was getting difficult for her to grip things. It started becoming very frustrating because she started not being able to do some very important things. It started with writing. It became difficult for her to grip a pencil. Being the Supermom I was, I figured this problem could be taken care of with some kind of special writing instrument. When we were at the MRI, an occupational therapist came over with a special catalog and we picked out a few things to order. The therapist ended up giving me the catalog because she knew that getting these things approved through insurance would take a while. She was right. Two month later, these inexpensive items were denied by our insurance. I didn’t wait for insurance, I ordered them myself to arrive in a few days. The pencil gripper didn’t really work, but the keyboard key puncher was great. Kami had a little keyboard at school that she had been using occasionally for writing. She was able to use the keyboard key puncher to help her do work in class.
Dr. Moertel told us the day after her MRI to try an experiment with decadron. He saw something that looked more like swelling rather than cancer near her brainstem. He thought this was affecting her hand. Because decadron can affect swelling, he told us to give her a big dose of decadron for three days then go back down and see what happened. We tried this, but it didn’t seem to help. Her hand actually got worse. I had gotten something to hold her spoon onto her hand as well. She could feed herself with that for a while, but it was easier for me to feed her. No big deal, I didn’t mind feeding her. She couldn’t click the mouse by herself so Gina or Duke would click it for her. No big deal, they liked playing on the computer with Kami.
Kami’s Daily Routine
Kami’s condition in general was getting worse. We tried to deny it and pretended she was doing fine. We pretended we were all doing fine. Everyday we loved each other as much as we could and we took life day by day. We appreciated each day we had with Kami. We had our daily routine and we served her as best as we could.
I woke up the earliest everyday. I had a moment of solitude in the kitchen as I prepared Kami’s medicines: Synthroid, decadron, Vioxx, Pepsid, stool softener, and any antibiotics or other special medicines. I entered her room, hooked on her G-tube, and gave her the medicines as she woke up. Then I rolled her over and put in a suppository so she could have a bowel movement before school. I let her sleep some more so the suppository could do its work. I got dressed and otherwise ready for the day. I got Gina and Duke up and got them breakfast. While Gina and Duke watched TV, Francois and I got Kami ready. Francois put on his gloves and took charge of the diaper cleaning and taking the garbage out. He didn’t want me having anything to do with the chemo either going in or coming out. We both rolled her from side to side to get the new diaper on and her pants on. I got the wheelchair ready which had been charging all night in the other room and brought it next to her bed. We sat her up and both lifted her onto her wheelchair. Then Francois left to get himself ready and I got Kami’s shirt, bandana, socks, and shoes on and strapped on her chest strap. Kami wheeled herself out and over to the TV. I got Kami’s breakfast ready and fed it to her. Then we all got bags ready, shoes and coats on, and we were out the door. Francois took Duke, I took the girls.
After we got home, it was much of the same. We all had our jobs and knew what we were supposed to do. Francois made dinner, and I played with Duke. Gina did her homework or watched TV. Kami watched TV or played on the computer. I did the dishes, and Francois played with Duke. Then it was medicine time. I got Kami’s medicines ready upstairs while Francois got her chemo ready downstairs. Gina was in charge of Duke as soon as Francois came upstairs. Gina had to take him to another room. Francois and I both wore gloves as we came at Kami with our many syringes. I hooked up her G-tube and did my medicines, then Francois did the chemo. I left the tube on for Kami’s midnight seizure medicine, and put my syringes in the dirty syringe bucket. Francois went downstairs, and put his syringes in the chemo bucket. Then we all came back together and enjoyed the rest of the evening. Francois always did therapy on Kami’s legs. I tried to either be with Gina or Duke or clean up the house a little bit. I was pretty tired by this time, so the house was pretty messy all the time. Kami had to stay up to watch Emeril and if Iron Chef was on, she had to watch that too. After Emeril or Iron Chef, it was time for her to go to bed. Kami wheeled herself over to her room. I got her pajamas on and put her patch over her eye. Francois used the suction machine to suction anything out of her nose so she could breathe better over night. Francois and I both lifted her onto her bed. We took her pants off and changed her diaper. We got her pillows situated so her legs were propped up. We said goodnight, turned on the fan and the humidifier, turned off the lights, and closed the door. I got Gina and Duke ready for bed and went to sleep with them in the other room. Francois, the night owl, stayed up doing work until it was time for Kami’s midnight seizure medicine. He got his flashlight, went in and did the medicine, unhooked her tube, put everything away, then finally went to bed.
One morning while I was changing Kami she said, “I feel so guilty that everyone has to help me so much.” This really made me think. I was so used to helping her that I didn’t really notice I was doing it. I helped all my children and I would do anything for any of them. Helping Kami was natural and a humbling experience. I felt very good doing it. I felt I must have been doing something Mother Theresa would have done. Mother Theresa did very humbling work. She helped clean people and get them dressed. She helped get people food and shelter. It was not glorious. It was difficult. But it was necessary. With Kami, it went way beyond all the physical things. I loved Kami so much I didn’t want her to have to worry about her physical disabilities. In doing all the physical things for Kami, I experienced such deep compassion for what she was going through. I experienced such deep love for her. I felt so proud to do things for her.
I thought about society and our role in it now. I felt we were doing something very important for society. Kami had gotten cancer by living in this society. Many people were getting cancer. Many people had to go through this. It was society’s responsibility to find out how to prevent this so people like Kami wouldn’t have to suffer and could live normal lives. Cancer was not Kami’s fault. It was not just Kami’s responsibility. It was not just our family’s responsibility. We lived in a larger world than just our family. Kami was living and going through this disease for the sake of everyone else. Her cancer would be a lesson to others. She was a warrior in the cancer battle. Hopefully her fight would further the cause of prevention and finding cures.
Kami was responsible for her own happiness and to keep going everyday. I told her all this and this made her feel proud that she had cancer. She felt like she was doing something good for society. She kept on focusing on the good things in her life and having fun everyday.
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