Physical Therapy, Radiation, Chemo, and Energy Healing
The next week we went to the clinic for check ups, blood tests, and physical therapy before we started six weeks of radiation. Physical therapy was fun for Kami and a very important way to get her moving. She loved her therapist, Lynn, and looked forward to her sessions. At home it was hard to get her motivated and get her off her chair. We had a chair at home with little wheels on the legs which became her special chair. It had a supportive back and we could move her around the house by pushing it. She sat in that chair in front of the TV with a tray table and a stool to prop up her feet. She did everything in that chair. It was perfect for her. We would sit on the floor next to her and stretch her feet while she did things on her tray table. We stretched her feet and calves and rubbed her leg muscles as much as possible. We were told to do this to keep her from getting too tight. Sometimes we would get her to sit on the floor and do some of her therapy exercises. Mostly she just liked to sit in her chair and have Francois do therapy for her. It was their special time together. “Therapy, Papa,” was what she said whenever she felt she was getting tight. She said those words so often every day for two years. It makes me cry now to think of her cute little voice saying that. If Francois was not in the room when Kami needed him, Duke would run to wherever he was and say, “Therapy, Papa!” We were told the more physical therapy in the beginning, the better, so we scheduled her for three times a week. She would start going to radiation five days a week, so three days she would have both radiation and physical therapy. Gonne found a woman who did Reiki healing and wondered if we wanted to try her. I was very open to complimentary therapies as I had done many alternative things for myself in the past. This woman, Lorraine, sounded good so we gave her a try. Kami liked her a lot and felt very good after a session with Lorraine. We had our first session with Lorraine the day before Kami was to start radiation and I think this helped her in many ways prepare for everything.
Kami started radiation on Wednesday, May 8th. Before she went that day, Dr. Moertel prescribed for her to take five huge chemotherapy pills called Temozolomide. This was the start of it all. Francois stayed home from work that day to help. We all sat on our bed together. Francois held the pills and I held a large glass of water. These pills were bigger than any adult pills I had ever seen. They were gigantic! I didn’t see how it was possible for her to take them, but I had to pretend it was no big deal. We made up a story together to get her to do it. That story helped us all, as Francois and I were very emotional having to give our daughter chemotherapy. It seemed like we were poisoning her. She had to take five pills, so we had each one represent a person in the family. She did the Papa pill first, then Mama, Gina, Kami, and Duke. It was scary because she had to get them down in one gulp. It wasn’t good for her throat to choke them back up. It seemed impossible, but she had no choice. We all became very serious and Kami became very brave. She took many deep breaths then said she was ready. Francois put the pill on her tongue and I helped her swallow it down with the water. She did it. It was horrible, but she did it. She had to do it five times. Then she was done for the day. It is unbelievable what kids with cancer have to go through. She had to take five pills a day for five days, then wait until the last week of radiation, and do it again for five days. She called these pills dragon pills. They were to breathe fire on her tumor. Then she would go do radiation where fairies would shine their magic wand beams of light on her tumor and disappear it. Then she had her red and white blood cell pigs come and eat anything that was left. I had read about how visualizations had helped people with cancer, so I helped her make up stories. They were all her ideas though, she always had great ideas.
After the dragon pills, we went to radiation. The radiation itself didn’t last very long, only about fifteen minutes, but Kami had to do it in a very difficult position. She had to lie down on a very hard table and put her head on a hard plastic mold. Her neck and upper back were not comfortable in this mold, so it was hard for her to be in that position. To make it much worse, they put the mask over her face and bolted it onto the table. Luckily there were holes for the eyes and nose so she could see and breathe. She had to stay like that while the technicians checked to make sure everything was lined up correctly. We all had to leave her alone in the room for the radiation beams. Luckily they had an intercom system and a TV monitor set up so we could see Kami and talk to her. I can’t imagine how scared she must have been that first time left alone in that dark room with her head bolted to the table. I talked to her constantly through the intercom and told her when the beams were coming, when she had to hold her breath, when the machine was moving, and when it was almost done. As soon as it was done we all rushed in to get the mask off and help her sit up. The technicians were all so nice and said very comforting, encouraging things to Kami and gave her candy afterwards. Then it was off to physical therapy.
Kami looked forward to physical therapy so we scheduled it after radiation. Lynn and Kami hit it off right from the beginning. Their personalities really connected. Kami had some bad days due to changes in her decadron dosage, but usually Kami was up for whatever Lynn had in store for her. Kevin, Lynn, and Cindy were all super terrific physical therapists and we felt very well taken care of in the physical therapy department. Kami’s left leg was fine and her right leg function started improving right away. At first she started moving her right foot, then she could push down with her foot and leg. She still couldn’t lift any part of her foot or leg up which meant she couldn’t walk by herself or walk up or down stairs. It was amazing to realize how many stairs were everywhere, and we had to lift her up and down stairs all the time. Kami could walk holding on with both hands to a walker or facing someone holding onto their hands. She dragged her foot around and forward. She had to wear an ankle brace at all times to keep her foot up and her calf stretched. Luckily Target had Velcro sandals that fit around her brace. Finding shoes for her brace was almost impossible! Later we found out Nordstrom let us buy two shoes of different sizes without charging us for two pairs. That was amazing! We had to strap Kami’s right foot up onto her stroller, otherwise it would fall off and she couldn’t lift it back up. We used her stroller most of the time when we went out. For short distances, she started using a walker. It was very awkward for her to use her walker in the house. There were too many obstacles and tight spaces. She used it sometimes, but most of the time we wheeled her in her chair. We would wheel her in her chair most of the way to wherever she needed to go and then hold onto her hands to walk with her the rest of the way. This worked out pretty well. She could stand just fine, so things like going to the bathroom were manageable. Lynn suggested also having some therapy sessions in the hospital’s very special therapy pool. This would help to add water resistance and support to her walking. Kami loved the pool sessions and we looked forward to those even more.
Kami made it through her first day of chemo, radiation and therapy. That first night we had some Tibetan monks come over and pray for her. Francois had had a Tibetan student, Yeshi, in one of his classes and had made friends with him. Yeshi brought two monks over to bless our house when we first moved in right before Kami was born. Francois called Yeshi when we got back from New York to have monks come over and pray for Kami. They happened to come over on that first day of radiation. One of the monks was the same one that came to our house before. We sat on the floor with the monks as they chanted. Gina and Duke played somewhere else, but Kami sat on her chair next to us. At one point Kami got off her chair by herself and knelt on the floor in a praying position. She stayed there for a long time listening to the chanting. It made us all cry. She knew what was happening to her. She was doing everything she could to heal herself.
Monday May 13, 2002
Kami has started her first round of outpatient treatments. She has started radiation which she will do five days a week for the next five weeks. She gets four quick beams, one to each side, right where the remaining tumor is. She thinks of these beams as fairies taking their magic wands and disappearing the roots of the tumor that were left after surgery. She has to wear a mask to secure her head in place. This is the hardest part. She thinks of this as her Queen Amadalla from Star Wars mask.
Kami is also doing chemotherapy. She is taking a drug called Temozolomide. She has to take five large capsules for five days, then wait a few weeks, and do that again, then the doctors will reevaluate. She thinks of these as her dragon pills that are traveling to the roots of the tumor and breathing fire on them to make them weaker and easier for the fairies to disappear. Then she thinks of her red and white blood cells as pigs that eat up all the left over tumor cells.
During all this she does physical therapy three times a week. We go to a wonderful room with wonderful therapists who play games and otherwise motivate her to move around and practice her exercises. The muscles in Kami's leg are definitely coming back. She can push down just fine now, but she still has trouble lifting up. She has a brace for her foot to help keep it lifted so she can walk better. She uses a walker and is learning to get around very well with it. It is a challenge to get her motivated to move around, she would rather sit and do activities. It is such a change in Kami. She used to be the one who was always on the move. Now she has suddenly learned how to read, can navigate to tons of fun sites on the Internet by herself, and loves to play cards and games.
We are seeing a wonderful energy healer once a week. So far this has been incredible and she has much more energy after these sessions. We are also trying to see a Qi Gong master who also works on energy healing. These people work with the stuck energy that she has been carrying around with her to release it so she can move forward. These complimentary therapies are important ways to make Kami feel better about everything that is being done “to” her. The energy healers help her to try to take charge of her own healing powers to heal herself. Basically we are trying to do everything we can possibly do.
We have been getting a lot of support from family and friends and appreciate everything everyone is doing for us. It is hard to put into words the emotional changes our family has been going through. We are pulling together and treating each other with love and compassion. Gina and Duke are involved every step of the way. They have gone back to their normal lives, but none of us will ever be normal again. We realize how precious life is and what a gift our children are. We are so thankful that we have been able to have this time together.
We wish peace and love to all of you and your family and friends. We hope you continue to pray for us. We will keep you updated. Take Care.
Love,
The Nguyen Family
Finishing the School Year
It was too much for Kami to go back to preschool. There were only a few weeks left of school anyway and it was very hard for Kami to get around in her classroom. There were steps up to her classroom, and a step inside separating the two rooms. She used her stroller outside and I would lift her from chair to chair inside. I would have had to stay with her to move her from place to place. She didn’t want me to stay with her at school. Since it was nice weather, much of the class time was spent outdoors. She didn’t want to just sit and watch the other kids playing outside. That was very emotional for her. Even though I tried to get her to go, she ended up only going once or twice for the rest of the year. Even though we had treatments and other therapies almost everyday, there were times when we didn’t have very much to do and Kami ended up watching too much TV. She didn’t want to go to school, but she was lonely for her friends.
I took a medical leave from my job to take care of Kami. Someone had to be with her all the time. There was no question that I would stay home with her. Before Kami’s illness, even though I had three small children, I felt it was important that I have a career. We had excellent child care for the kids and I worked full time. I was able to make enough money to pay for child care with just my salary. I felt good about myself and I felt the kids were not only having contact with other kids, but getting a great start on their education. I worked as a school librarian and computer teacher. I also volunteered every so often in the library at Gina’s private school. My long term goal was to get a job at this private school. I really liked the working environment of this school. In my career, I had worked at different schools and I could feel there was something extremely special about this school. It felt very nurturing. It was like being at home. There was a feeling of family there. It seemed the teachers really enjoyed their jobs. I wanted to work in a place where teachers loved what they were doing. A few weeks in to Kami’s radiation, I found out the computer teacher position was opening up at the school for the next year. Positions didn’t open up very often at that school and this would have been a great opportunity. I found out about the job opening just before we went to radiation one day. I remember watching Kami in the monitor and crying because I wouldn’t be able to get the position. I did apply for the job and had an interview. It was hard getting through the interview, but I did it. I didn’t know what I would have said if they asked me about Kami. I practiced something about how Francois shared in much of the care giving (which was true) and that it would be no problem for me to handle a full time job and take care of everything else. Kami, or my role in her care, was never actually brought up in the interview (I think it was illegal for them to ask about childcare in an interview), but I know they must have been thinking about it. I was not in the best place emotionally and probably didn’t do as well as I could have. I didn’t get the job.
We got through the first few weeks of radiation well. Kami’s radiation doctor, Dr. Farniac, talked to us once a week and made sure everything was going well. She talked to us about nutrition and possible loss of appetite. She talked to us about possible throat problems and possible thyroid problems in the future. None of these things were happening. Kami was tolerating the radiation very well.
During this time was Kami’s graduation from preschool. Kami had gone to this preschool since she was a toddler. Gina had also gone there and Duke had just started going there a few months before Kami was diagnosed. We loved this school and all the teachers and families. The owners of the preschool, Ron and Phyllis, set up a collection for us at the graduation ceremony. Everyone was so nice and we had a very special graduation day. We thank our preschool so much for taking such good care of our children. I don’t know if it takes a village. For us, it took a great daycare and preschool.
Also during this time Kami lifted her leg for the first time. Francois was walking with her in the house holding both of her hands and Kami said, “Look, Mama!” I turned around and saw her lift up her knee. I started screaming and crying. It was a miracle! We had a good Memorial Day weekend. The movies “Spirit” and “Star Wars Episode 1” had just come out so we saw those. We spent a glorious day at John and Cynthia’s cabin. Kami was doing so well, we started lowering her decadron. Some days she didn’t have any decadron, some days she only had a small amount. Decadron was a steroid and hard to get off of. We were so excited to get her off the drug that made her so hungry, anxious, and moody. Kami was on decadron for pain relief and she didn’t seem to have any pain at this time. We didn’t know it, but we were in for hard times ahead in terms of pain.
Monday May 27, 2002
Happy Memorial Day to everyone! We have been doing great. Kami is now half way through radiation and she is taking it very well. We have been seeing an energy healer once a week. That has been very good for Kami. Just yesterday Kami lifted her leg and was able to bend her knee for the first time since surgery. We all celebrated! Miracles are happening! Positive thinking with visualizations and knowing that her mind can help cure her has been very powerful for her. Radiation and chemotherapy are things she feels the doctors are doing to her, even though we try to explain and she knows that these things are helping her, they seem intrusive and very difficult. Doing complimentary therapies are very gentle ways she feels she can take control of her own healing. I pray for more miracles. We are planning a trip to NY this summer to see a Tibetan Doctor who was the Dalai Lama's doctor. We hope he will be able to prescribe some Tibetan medicine for Kami. After radiation, she will start stronger chemo. We are nervous about this, but hope for the best. Keep us in your prayers. Please kindly help us with donations as our bills are starting to come in and even though we have very good insurance, there are many extra things to pay for.
Thank you,
Kathryne
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