A Good Spring
Spring break ended and we learned a new routine of living in the apartment. Our living space was cramped, but we actually managed well. We only had a minimal amount of stuff, so it felt like we were on vacation. The kids were still in shock about moving and had just come from our fun Disney trip. The weather was getting better which lifted everyone’s spirits. The kids were actually very good about accepting the apartment. Duke even got used to apartment life. Being in an apartment with children was a challenge. We had to be quiet, try not to damage the white carpet, and force ourselves to go outside every once in a while so we didn’t feel trapped. In order to get out to the car we had to wheel Kami down a long hall, take the elevator, then walk a long ways through the parking lot to get to where our car was parked. It took a while, but it was all accessible which was great for me.
One day, Francois came home to the apartment after doing something at the house. He said there was a turtle right in front of the house and he brought it in for us to see. It was a beautiful little painted turtle and we wondered how on earth it had gotten to the house! It was very symbolic because we always called Francois a turtle—he was very wise but very slow. We had to keep it. We went to a pet shop that evening and bought a small tank and set it up in our living room. The kids were thrilled to have a pet. He was a nice companion and reminder for us that slow and steady wins the race.
School was going well for everyone. Kami’s class was full swing into their Hawaii unit. They made a rainforest out in the hall, learned about tapa cloth, petroglyphs, and different kinds of boats. They learned about Hawaiian animals, fish, birds, plants, and fruit. They learned about and made Hawaiian quilt patterns. They studied about the artist Paul Gauguin. They heard Hawaiian stories and legends and played Hawaiian music with authentic instruments. They even had a special Lei Day where they each made a lei with fresh flowers sent all the way from Hawaii. It felt like paradise in the classroom. Pure joy was on Kami’s face each day. She was able to move around much better now. She was able to sit on the floor supported by a pillow and play with her friends. She was able to dress up in the Hawaiian clothes, play with the instruments and practice her hula dancing. She was able to scrape coconut out of its shell and pound bananas into poi. She was able to fully participate in every aspect of the class play. She loved Hawaii!
In terms of medicines, some things were going well, some things were not. Even though our original plan was to be off hydrocortisone by April, because she was having so much trouble with nausea with this new chemo, we decided to keep her dosage steady for the month. Having this low dose steroid everyday gave her a little bit of an appetite and helped her not throw up her medicines. When we got back from our trip, Dr. Moertel told us to give her a few high doses of steroids to stop her vomiting. When that didn’t work, we decided to stop the Thalidomide and Cytoxin altogether. We felt it was more important for her to keep down the VP16. After a few weeks, we tried Cytoxin again. Her vomiting continued to be a problem.
Kami was such an incredible sport about the whole situation. She would try her hardest. She knew these medicines were helping her. Francois would come in with the cups. We would try different juices. She would prepare herself by closing her eyes and taking deep breaths. She would take her sips and breathe deeply. She would drink it all down. We would all feel relief that it went down. Would she keep it down today? Maybe this would be a good day. We would start back at our activities. Suddenly she would gag and I would quickly run and put the bucket in place. Not today, not today, maybe tomorrow.
My birthday, April 21st, was approaching. I tried not to make a big deal about my birthday, but it seemed to be a very powerful day for everyone. I like to think of my birthday as Queen Elizabeth’s birthday, but unfortunately it is also the day after Hitler’s birthday. The first time something happened around my birthday was the stand off at Waco, Texas. Then there was the Oklahoma City bombing, then the Columbine shooting. The year of Columbine, Francois’ mother died on April 20th after she had been in a nursing home for two months following a debilitating stroke. Francois was very close to his mother and this was very difficult for him. Last year for my birthday, we had taken Kami home from the hospital for the first time. It had snowed that day and since Francois’ mother’s name meant snow in Vietnamese, we felt it was a blessing from her. This year Easter was on the day of Francois’ mother’s passing, the day before my birthday. We were invited to go to brunch with John and Cynthia as was our tradition.
On that Sunday morning, I woke up in complete and utter back pain! I had never been in so much pain in my life. I had so many responsibilities I had to attend to, but I couldn’t even get up! I didn’t know what I was going to do. Francois took over the kids, we cancelled brunch, and I rested the whole day. My pain must have come because I didn’t have to lift Kami at all now that we were in the apartment and my body gave out after the crisis was over. We had been in crisis for a year now, and it seemed like Kami was getting better. It was my turn to fall apart. Francois had seen a chiropractor a while back, so I called him and went in to see him the next day. Even though I could get up and walk around after a day of rest, I was still in a lot of pain. Dr. Rydberg treated me and I felt much better. I set up appointments for myself to see him for the next few weeks.
April was a big month for Gina. Gina had painted her “Cats” painting and it was on display at school. Later, that painting was put in the school calendar were it became famous. Gina also made her stage debut as the mother in her class play. She did an incredible job and gave a memorable performance. Gina’s favorite day of the year was the day of the school Bazaar. It was a day of games and outside activities and it signaled the end of the school year. Gina was glad to be ending school soon and was looking forward to summer.
April 2003
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