Kami’s G-tube and Walking Her First Step
May brought resolution to Kami’s nausea problem. Dr. Moertel was on vacation, so after Kami’s MRI, we met with a different doctor at the clinic. We expressed out frustration with Kami’s inability to keep down her medicines most of the time. We also expressed how worried we were that she had not eaten very much for the last few months and was losing so much weight so fast. This doctor had not seen Kami when she was heavier and did not know her history very well. Sometimes it takes a new person to come into a situation to come up with a solution. This doctor suggested we put a G-tube directly into Kami’s stomach and give her medicines that way. Later on, if it was necessary, we could also feed her using this tube. It was a brilliant idea and a huge burden lifted from our shoulders, especially Kami’s. When he returned, Dr. Moertel agreed with this idea and set up surgery to put in the G-tube for the next week.
School was coming to an end and there were some very special end of the year highlights. One special day was the PE field day. Each Kindergartener had a 4th grade buddy and they went around and did the different activities set up all around the outdoor field. Kami had two buddies assigned to her but eventually attracted a group of onlookers. Kami patiently waited her turn at each station, then got out of her wheelchair and did each activity as best as she could by herself. She was amazing! She had a great time. To her it was no big deal that she was functioning pretty much normally outside. To us it was a very big deal.
Two days later Kami went into surgery to get her G-tube placed. Everything went well and she came out of it with a very long tube sticking out of her stomach. I was shown how to work the tube and was told it would be changed into a small button in about six weeks. The long length of the tube was a problem. We had to pin it up to the side of her shirt so it wouldn’t get caught on anything and pulled. Any hassle with the tube, however, was worth it. As soon as we gave her her medicines through the tube, she stopped throwing up. As Kami said one day, “This G-tube works like a charm!” She was so happy she didn’t have to go through the torture of swallowing her medicines everyday.
Things started getting better each day. One day in school Kami walked her first step on her own with no assistance. We were hanging around after school with the teachers getting ready to go home. Kami just stood up and took a step. We all saw her and cheered and applauded. After that, there was no stopping her. Kami’s walking improved so rapidly, it got to the point where she could walk even long distances without assistance. One morning she wanted to surprise her class by walking from the car to her classroom door without her wheelchair or her walker. As she walked across the playground I was filled with excitement and pride. I also noticed for the first time how hunched over she was. She looked like an old grandmother so small and frail and hunched over. Why hadn’t I noticed her curved back before? Maybe it was because she was getting so thin now her bones were starting to stick out. I tried to keep the thought of her curved back out of my mind as I reveled in her newfound walking skills.
Friday, May 16, 2003
Kami had another MRI last week. The results were mixed. Some areas of tumor are shrinking where other areas are growing. This means the medicines she has been taking are working! But we need to add more to stop the growth.
We will enter another year of the cancer battle.
Before we had children, we had relative control over our lives. We made plans and set goals and worked hard to achieve them. Then the kids came along and we let go of some of our control as we lived in the glorious chaos of raising a family. Cancer is forcing us to give up all of our control. We are forced to live day to day and deal with what is immediately in front of us.
Kami's progress has been absolutely remarkable! She walked for the first time on her own without the assistance of her walker or crutches. It is a miracle! She is very excited about this and very motivated to do many things she has not been able to do since her surgery over a year ago. She doesn't have much endurance yet, but hopefully that will come.
Kami has been able to transfer from the strong steroid decadron to a much lower dose of the steroid hydrocortisone. Since winter break, she has lost 30 pounds. We will keep her on this steroid for a while longer. We anticipate a summer of chemo treatments, physical therapy, and as many fun things as we can do in between.
We pray for the well being of Kami and the rest of our family. We ask for prayers and any help you are able to give us. We appreciate all that everyone has done. All of our actions have made a difference.
Blessings to you all,
The Nguyen Family
End of School
The highlight of Kami’s school year was the class Hawaiian play. The class worked very hard on their lines and many songs for the play. They made scenery, props, and special costumes. They practiced every day and each student had a special part. Kami had a few lines to say as well as parts being a drum player and a hula dancer. When everyone was to sit on the floor, Kami had a chair to sit on. When everyone stood to sing a song, Kami was able to stand up from her chair without any assistance and sing right along with them. The highlight for me was when Kami stood and walked to the front of the stage by herself and did a short hula dance with a few other girls. Then she walked back and sat in her chair. This was a huge miracle! It must have looked normal to most people, but just a few short months ago, I thought the teachers were dreaming when they thought she could do that.
We were all so proud of Kami. We were all so happy with what she had done this year. Kami had had a great year with her teachers and classmates. She had gone through so much. She was getting better. I felt the school should acknowledge Kami for her achievements this year. I felt the school should have given Kami special credit somehow for everything she had gone through in addition to school. I felt the school, the teachers, and the students should have been congratulated on how well they supported Kami. There were many opportunities at the last few school assemblies to give Kami special acknowledgment. Many people in the school were acknowledged for special contributions throughout the year. There were many times I felt like standing up myself and giving Kami and the whole school a cheer, but I felt acknowledgement from me was not appropriate. Surely Kami had been extraordinary. Surely everyone had noticed the miracles happening in front of them. Surely everyone would feel good about giving Kami a little extra boost. Why hadn’t anyone said anything? I wasn’t sure. No one said anything to me in the halls. No administrator came up to us and congratulated us for getting through this extraordinary year. I felt like something was wrong in the silence. I didn’t speak out or ask anybody. I felt like I might jeopardize something for Kami if I did.
Everyone was very happy those last weeks of school. There were lots of fun activities. There were field trips, parties, picnics, and good byes. We planned to keep in touch with Kami’s teachers over the summer. We planned play dates with friends. We were moving into our new house soon and had lots of plans for a fun summer. It was hard to leave school, but we felt confident that we would be back for another fulfilling year next year.
May 2003
Page 17