Before Winter Break
Gina had a special day for her birthday at school. It was called “Student of the Week.” She got to tell about herself and bring her family in to show them off. We decided not to bring Duke in because it would have been too difficult to get him back to daycare after that. It was sad that we couldn’t bring him, but it was just not possible since I had to stay at school with Kami. Francois came and we made shrimp chips in the school’s little kitchen for a snack for the class. Kami and I helped out and everybody loved the chips. We all had a great time being interviewed by Gina’s classmates. I was nervous about what they would ask and about what would be said. I was nervous that it would all be about Kami, and that Gina would feel left out as usual. Everything went very well though. Gina spoke out more than I expected her to and the kids acted very natural about Kami. I was very proud of the whole situation.
December was a time for parties and Francois and I got invited to a very fancy ball. Francois and I had not left the kids since Kami had gotten sick. Our very good friends Tom and Mona arranged to have their kids come over to our house with a wonderful friend, Jeanne, to baby sit everyone. I didn’t feel dressed up enough or ready emotionally to mingle with people, but with the kids all taken care of, we had no choice but to go. Before the official ball, there was a dinner for the school parents at a very nice restaurant. When we got to the restaurant, we sat down at a table with three other couples who were our very good friends. This made me feel more comfortable and able to enjoy myself. I was seated between two wonderful husbands, Phil and Chapman, of my very good friends. I felt so lucky to have the attention of these two incredible men. After dinner, people started getting up from their tables, talking, and even singing songs. Suddenly Francois became the emcee and got everyone into the action. He got very unlikely people to let loose and sing boisterous Christmas songs. Francois became the life of the party. I was so proud that this group of people got to see the party animal side of him I had known so long ago. After the dinner, we went to a fancy hotel for the dance. Francois and I danced a little, but I felt guilty to be staying out so late. We had had enough fun and it was time to go home. When we arrived home we expected the kids to be asleep, but they had stayed up and waited for us. I felt guilty, but they had had a very fun evening and all was well.
Kami had her MRI right before winter break. We were feeling relatively good about how she was doing. We could tell that radiation had stopped her symptoms from getting worse. For now she seemed fairly stable. To say we had had a very busy fall was an understatement. We had had a tumultuous fall. We wanted so much for this MRI to be a good one. We couldn’t even think about the break yet until we knew the results.
Friday, December 19, 2003
Happy Holidays Everyone!
Kami had her routine six weeks after radiation MRI yesterday. There has been no tumor growth and the tumors look less dense. This is good news. It looks like radiation did something. It can take three to six months to see the full effects of radiation. So we have to wait and watch her carefully. In the meantime, Kami will start her favorite VP16 chemotherapy drug again. We got such great response from this drug before, we hope it will work again.
The growth of these latest tumors happened so fast. It was in about 2 weeks that we saw the right side of Kami’s face weaken and noticed that she couldn’t hear out of one ear. It reminded us of when she first complained of pain in her back. It all happened so fast. We are very thankful that we were able to get radiation for her right away.
We don’t know what cancer is, how or when it will happen. We do know that we will fight—whatever happens. We are learning so much. We have so many that are following Kami’s story and care so deeply for her. We thank you all for your support in so many ways. It has been a very long road and continues to rage on. We have not been totally weakened, on the contrary, we are stronger. We appreciate the meaning of life more and are able to love on a deeper level.
It is amazing, the power of a small child, if you are willing to see her potential and feel her unconditional love, she can bring more out of you than you thought you had. Bless the children of the world. We hope peace will come to them.
Peace to you all,
The Nguyen Family
P.S. Thank you to those who supported the “Gifts by Gina” website for your holiday shopping!
The Holidays
We felt so lucky and grateful for the results of Kami’s MRI. We were still dealing with so much uncertainty, but we felt a little relief with this latest news. We were able to relax a little for Gina’s birthday party. Kami was feeling good, so we decided to do a repeat party that we had done a couple of years before at the Embassy Suites Hotel. The kids remembered having so much fun at this hotel party, we wanted to try to recreate it. Gina had about ten friends, Kami got to invite two friends, and Duke even had a friend. It turned out that Gina’s friend Genevieve had a brother about Duke’s age, so their mother, Elizabeth, stayed and helped out with the boys. It was a good thing she did because we had our hands full with everything else. Francois and I got everything ready for the party, I helped Kami, and Francois video taped. First we had swimming at the hotel pool. Kami was a great sport and went swimming with everyone. I helped her at the pool and everyone had a great time. Then we all went back upstairs to get dressed. Kami was in her electric wheelchair so was able to move just great around the hotel. It was a little hectic making sure we had everyone and getting everyone dressed. After we were all dry, we had pizza and popcorn, did some fun arts & crafts projects, had cake, and opened presents. Our good friends Vera and Phil came to help out and everything went very well. After all the guests left, our wonderful friend and babysitter Camila stayed and the girls watched “Legally Blond” together. They loved that show especially because Camila was studying to become a lawyer. We slept overnight at the hotel, had a good breakfast the next morning, and went home. It was an amazing birthday and just as good as Kami’s surprise party. It felt so great to be able to give both girls wonderful parties that year.
The next day we went to Christmas brunch at the country club with John and Cynthia. I think the kids were a little tired, but we still enjoyed ourselves very much. It was always so nice to have a traditional family brunch for the holidays. We got dressed up, the food was delicious, and it was so good to spend time with family.
The next day it hit me that I had not planned anything for the two weeks of winter break ahead. I was exhausted, I hadn’t bought enough presents, the tree wasn’t decorated, and we hadn’t made any plans to spend time with anybody. All I could do were the tasks in front of me. The two days before Christmas I had the kids go downstairs where the tree was and decorate it. We had a lot of fun doing this. We had Christmas music playing and the lights on the tree. Somehow we figured out some great ideas for homemade ornaments out of stuff we already had. Kami stayed busy making a very long chain out of shiny silver paper. We had popsicle sticks from a previous project and lots of beautiful colored thread. The girls made beautiful god’s eyes out of these. Francois took Duke out to museums and shopping on these days to get more of Duke’s energy out. The girls and I ended up having a very special time together.
Then the real Christmas miracle happened. Just like last year, Francois’ brother Thomas called. He and the kids could come for Christmas! Thomas’ wife worked for the airlines so they could come on standby. We were all very excited to have them. Francois went out food shopping right away and that night I went to Target and was able to get some last minute gifts. They arrived on Christmas Eve and we had a wonderful celebration. That night the kids all played together downstairs. Paul (Ghoi) put on one of his famous doll puppet shows and I never heard the kids laugh so hard. Then we all played twister, with Kami spinning, which was hilarious. We all went to bed happy, knowing Christmas would be a fun day.
Christmas morning present opening was very fun. Duke got a lot of Power Ranger stuff, Gina got art supplies, and Kami got dolls. Everyone got something and everyone was happy. That afternoon everyone decided to go sledding next to the house. We had a big hill there and the snow was excellent. Everyone went outside except Kami and she felt left out. I told her that I would go sledding with her, but she wasn’t sure. I got her dressed in snow stuff anyway and we went out just to watch. Everyone was having such a great time. Kami got up the courage to try it. I carried her over to one of the sleds, sat her in the front and got on behind her. Francois pulled us over to the hill and down we went. It was thrilling! We screamed and got snow in our faces at the bottom. It was great! I carried Kami back up the hill and that was enough for her. She did it and she had fun. Later when we were back inside and warm, Kami got out the Chinese calligraphy pen she had just gotten and drew some amazing artwork. She drew an incredible picture of a dragon in the clouds. I think she felt like a dragon flying through the clouds on that sled. The fun of the day was not over. Somehow we managed to get reservations at a Japanese Teppanyaki place. Thomas took the boys out to visit friends and we took the girls and Duke out to dinner. Duke fell asleep in the car and slept almost the whole time in his stroller. The girls had a very special time. The cook put on a good show and the food was delicious. The girls loved it so much, they felt like Japanese princesses.
December 2003
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