Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 7
Winter and Spring 2004
Tumor Growth in Kami’s Lower Back
We had a few days after Christmas with Thomas and his family, then they left that weekend. The day after they left, something happened to Kami. She suddenly could not stand up. Since radiation, Kami’s walking was not steady, but she could do it. She needed to hold on to someone, but she was able to get up and would always walk a few steps from chair to chair. It was true we did not have her walk long distances. Since she got her electric wheelchair, she did all her long distances in the wheelchair. Was it this lack of using her walking skills that lead to this latest inability to get up? We didn’t know what was happening. It came and went. Just like everything else, sometime she could stand up, sometimes she couldn’t. I freaked out and started to worry. Dr. Moertel was on vacation, but somehow I convinced everyone at the clinic that Kami needed an emergency MRI. For some reason the last MRI was only of her head to see what radiation had done. I was angry at the time that it was not the whole spine, but was so happy with the results, I didn’t think any more about it. Now she was having problems with her lower back. They got her in for an MRI the day before New Year’s Eve. Since Dr. Moertel wasn’t there, we waited until after the holiday to get the results. We tried to celebrate New Year’s Eve by going out to a restaurant, but Kami wasn’t feeling very well so we came home early.
By New Year’s Day Kami couldn’t stand at all. I guess the results of the MRI were bad because when Dr. Moertel got back from vacation, he called us and asked if he could come over to our house to give us the results. He came over and told us that the tumors had grown in her lower back. We could go through another round of radiation to her lower back. He also told us it looked like there was tumor growth in her upper back as well. Since there was evidence of tumor growth where she had already been radiated, radiation to her lower back was not the best option at this point. We needed to try a more aggressive chemo that would hopefully hit everywhere. There was a new phase 2 chemo that had just come to the University, so we were told we had to go over there and meet with one of their doctors the next week.
The immediate problem for Kami was going to the bathroom. Since the beginning, we had a commode chair for Kami to use when going all the way to the bathroom was not convenient. We would bring the chair to her, help her walk over to it, and she would go. Now, even though we had the commode right there next to the chair Kami was sitting in, it became almost impossible for her to use it. I would have to lift her, put her whole weight against my body while either Francois or I pulled down her pants, then transfer her over to the commode. Then I would have to lift her up, lean her on me again, pull up her pants, and transfer her back over to her regular chair. I had to do this while I was on my knees. I could do it, but after a few days of this, my back and knees were really hurting. We needed to find another solution. Diapers were the first thing we thought to try. We went and got some Depends underwear and tried it. They worked, but they were expensive, so we tried generic brands. She soaked through generic brands and after a few changes of clothes, we went back to the Depends.
Home care came over to our house to talk to us about the possibility of using a catheter. We discussed how it was used and what we would have to do. It seemed like just as much work and more discomfort for Kami. We were told that a catheter actually increased the risk of infection as opposed to using diapers, so that made our decision for us. We wanted to avoid infections as much as possible, so we decided to stick with the diapers. This was a whole new frontier for Kami. How would she be able to go to school wearing a diaper? We had a few days left of winter break to practice before school started again. Kami went back to school that Monday. Unfortunately she got her clothes wet that morning and wanted to go home right away. I had brought extra clothes with us just in case and had to figure out how to change her at school. We went into a bathroom and I figured out how to change her. It took a while and was painful on my knees and back, but I got the logistics of it down. We needed to get better diapers. Eventually we were able to find a service that provided good quality diapers for us. These diapers kept Kami dry for the whole school day. With these good diapers, it didn’t take long for Kami not to be bothered by her situation. She focused on school, learning, and having fun instead of on her problems.
That next week we went to the University and talked about a new chemo. We didn’t like having to go to a different clinic, but we were so thankful we didn’t have to travel to another state to get this chemo. We were afraid that we would have to travel at some point, but the chemo they had for us here seemed promising. Kami had to wait until the beginning of February to start the chemo because she had to have been done with radiation for three months before starting a new chemo. That was another reason not to do radiation on her lower back. If we had done radiation on her lower back, we would have had to wait three months after that to start a new chemo and who knows what would have happened in that time.
Meanwhile, Kami was having pain in her lower back, so we had to increase her decadron. She was also not comfortable sleeping in her regular bed any more. We needed to get a hospital bed for her and one that gave her back more support. We were able to get her a hospital bed with a special mattress so she wouldn’t be in pain when she was in bed. In the old house right after Kami’s cancer diagnosis, we all ended up sleeping together in the same room. It was a combination of convenience in dealing with the kids in the middle of the night, and because we were all scared. Our bedroom was long and narrow so we were able to get all the beds in there plus a hospital bed for Kami. When we moved to the apartment, Kami was feeling better and we didn’t need a hospital bed anymore. We only had one bedroom in the apartment, so we all slept together on mattresses on the floor and it was very cozy. In the new house, our master bedroom was big enough to accommodate all the mattresses and still allow for the wheelchair to roll by, so we just all slept together again. The room was not big enough this time, however, to fit everyone and the hospital bed. We had to split up. Splitting up ended up being fine. Kami wanted more privacy anyway because she was going to bed earlier than everyone else and didn’t want any disturbances. Francois slept in a bed next to her and helped her with anything in the middle of the night. I needed to not be disturbed in the middle of the night, so I slept with the other kids in a big bed in the other room. This other room was Gina’s room that she had been using during the day. Now Duke and I slept in there with her and it all worked out well.
We were all still very scared. Kami was getting worse and what did this new chemo really have to offer? The bottom line was there wasn’t anything proven to cure this kind of cancer. We started a new phase of hopelessness. We were so hopeful last spring when she started walking again. We felt so sure she would be the one to beat this. We had such a great summer. When it spread to her brain stem in the fall, we became very scared. But then after radiation, we had hope again. We thought maybe radiation had gotten it just like it had before. Now with this, not only her lower back, but the other places that had already been radiated, it started looking very hopeless. We became weary, we became broken down. It was the kids who held us up. They were so innocent. They always had so much hope and faith. They always wanted to have fun everyday.
Saturday, January 10, 2004
Bad news now about Kami. Tumors are growing in her lower back causing pain and trouble standing and walking. We are able to control her pain with decadron and she is a pro with her power wheelchair. She also has tumor growth in areas that have already been radiated. We will start on yet another chemo drug. Fortunately there is one available for her through the University that we will try. We may do radiation to the rest of her back at a later time.
We were very upset by this latest development because it seemed like she was doing so well after radiation. We have dealt with so much uncertainty and so much fear. We have gone through so many ups and downs with hope and hopelessness. We have to face a roller coaster of emotions everyday. The kids, however, drive us to keep up with daily activities. Serving them relieves our anger and sadness, our guilt and regret. We do everything we can to keep their lives and our lives going. The kids are absolutely amazing. They don't want any of this to get in the way of their normal lives and they don't let it.
So we go on... We will keep you posted,
The Nguyen Family
Cancer should not happen to children, but it does and we are all responsible.
Trying to Cope
One thing Kami liked to do was go swimming. We hadn’t done pool therapy in a while, so we thought we would go back to that. We scheduled weekly visits to the pool with Kami’s favorite physical therapist, Lynn. It was so good to be with Lynn again and so good to be in the nice warm pool. It was quite an ordeal to get Kami dressed and undressed now that she couldn’t stand. Luckily they had a big changing table at the pool as they had many children with special needs. I used the table and rolled Kami from side to side. It was still difficult as Kami was getting heavy again and couldn’t support herself. I couldn’t imagine how people did this for adults. We had been watching Christopher Reeve’s struggle and got a lot of inspiration from him. All the trouble of changing for the pool was definitely worth it. It felt so good to Kami to be supported by the water and to get into different positions. At this point we were interested in getting her comfortable, rather than doing exercises to help her walk. The cancer in her lower spine had cut off her ability to walk completely. Not only could she not walk anymore, she could not stand or even move either of her legs. Just a few short months ago she had walked all over school for Halloween in high heels! Now she couldn’t move anything, not even wiggle her toes! The effects of cancer were so fast and so devastating. She couldn’t move her legs at all and she was stuck either sitting or lying down. Being in the pool enabled her to stretch out, get into different positions, and feel good again.
January was the school’s annual Jumpathon for the Heart Association. Kami was very excited for the Jumpathon this year because she remembered how much fun she had last year being the announcer. When we arrived at the gym, Kami went straight to her position next to the PE teachers. They let Kami do the announcing just like last year, just like it was her regular job. She enjoyed herself, but it was different than last year. She was not as animated or excited. She knew she was getting worse.
Kami had an MRI only one month after her previous one. It had something to do with starting the new chemo. They had to have a record of her scans right before she started this chemo. We used this MRI as an opportunity to change Kami’s G-tube button in her stomach. Kami first got her G-tube the previous spring. At first she had a very long tube coming out of her stomach that had to be pinned to her clothes so it wouldn’t get pulled. It was a little inconvenient, but we loved the G-tube so much. We gave all her medicines through it and she didn’t have to drink them anymore. In August, we had gotten the long tube changed to what they called a button. A button was just the end of the tube sticking out. It was much better to have a little button than a long tube. In order to give Kami her medicine, I would open the button, attach a longer tube to it, put a syringe into the end of tube and push the medicines in. It worked really well. In August when they put the button in, Kami was very skinny. She was back down to her original weight of 50 pounds. Now she had been on decadron since October and had gained weight again. Her button was getting very tight and was irritating the skin around it. It was easy for them to change her button to a different size, so we decided to do it while she was sedated during an MRI. We decided to do it at this MRI and everything went well. The results of the MRI were about the same as the last one. This was to be expected since it was just a month before.
The end of January brought Vietnamese New Year. Last year, we had a pretty quiet New Year. This year we talked about having a party. It would be nice to invite our friends to our new house and it would be fun for the kids to have people over. It was a lot of work for us to plan a party and as Vietnamese New Years Day came and went, we still hadn’t done it. Kami still wanted a party. She talked about it everyday and put pressure on us to have the party. She helped plan the menu and helped with the invitations. We finally had the party the week after New Years and it was great. Lots of people showed up and we had lots of good food. It was a good time to thank all those who had been good friends to us by inviting them to our house for this special occasion. People who hadn’t seen Kami for a while could tell she wasn’t doing very well. Kami had fun that day, but she was definitely different. She was in her electric wheelchair. She was heavy again and puffed up from decadron. She wasn’t bubbly and laughing. She didn’t interact with many people. Those she did interact with knew how wonderful she was and made the effort to make this a special day for her.
January 2004
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