RSV
Kami was supposed to start her new chemo, R115777, the first week of February. She had an exam scheduled for the middle of the week with the intention of getting started on the new chemo. Fortunately our own clinic had gotten permission to administer this chemo so we didn’t have to go to the University after all. Kami had been coughing for a few days and the night before her appointment she had a little blood come out around her G-tube. We showed this to Dr. Moertel the next day. He was a little concerned, but didn’t think it was a very big deal. That night however, a lot of blood came out from around the tube. We ended up calling the doctor on call at the emergency room because she was soaking up towels of blood. He wasn’t sure what it could be and advised us, if it didn’t stop, to come in. It wasn’t stopping. Francois wanted to wait because it had stopped the night before. I didn’t want to wait. I packed a bag, changed Kami into her pajamas, said goodnight to Francois, Gina, and Duke, and took Kami to the emergency room.
As it turned out, by the time we got checked in and saw a doctor it had stopped bleeding. Francois was right, but I still wanted to know what was going on. The doctor on call didn’t know what it could be. I told him that we had just had her G-tube button changed the week before. The button was fine for a week so that didn’t really make sense that it would start having problems now. The doctor let me choose if I wanted to stay overnight at the hospital or go home. I knew something was wrong and if we stayed in the hospital we would have a bunch of doctors working together the next day to figure this out. If we went home, we would get the run around on the phone trying to make appointments with various doctors at various outpatient clinics. I chose to stay in the hospital. We went up to the fourth floor and spent the night.
The next day there were a bunch of doctors who came in to see Kami. A stomach doctor came to check the G-tube and said he didn’t see anything wrong. The surgeon who had changed her G-tube button came in and said he could cauterize the skin around the opening. He would have to sedate her to do that. I agreed and the procedure was set up. We got her down to the surgery room and the surgeon was ready to go. The sedation doctor listened to her lungs and said Kami could not be sedated because her lungs were not clear. The procedure was canceled and a respiratory doctor was called in. I knew she had been coughing lately, but I didn’t think her coughing was much of anything. Francois was there by this time and he had thought the bleeding had something to do with her coughing. He was right. The respiratory doctor took samples and it turned out Kami had RSV. RSV was a pretty bad respiratory virus. The RSV made her cough and the coughing had irritated the area around her G-tube. Kami went back upstairs to the fourth floor and started a course of medicine that was taken using a nebulizer. Her cough cleared up and so did the bleeding around her G-tube. It reminded us of the time she had pneumonia and we didn’t know it until it was detected in an MRI. I think because she was on so much decadron, her symptoms for various respiratory illnesses were masked. Kami stayed in the hospital a few days until she got a little better. We were sent home with a nebulizer kit and instruction for doing the medicine at home for a few more weeks. She wasn’t contagious so she was able to go back to school. She was also able to start her new chemo which she did the day after she got home. We were able to give this chemo to Kami as a liquid through her G-tube. She took it well without side effects.
Holding Her Head Up
For some reason that next week Kami was not able to hold her head up. One day in school she felt her head was so heavy, she had to support it by leaning her chin on her hand. We had to go in for counts that afternoon anyway, so we went up to talk to a physical therapist first. Luckily Lynn was there and she suggested Kami get a neck brace. She brought us upstairs to an office where they made neck braces. They were able to cut down a piece of foam and put it around Kami’s neck. It worked pretty well and we were happy we were able to get something for this problem right away.
This brings me to the second major problem our chiropractor, Dr. Rydberg, solved for us. The first thing was the thyroid medicine. Quality of life for the whole family went way up when Kami started taking thyroid medicine. When Kami started taking thyroid medicine, her tantrums completely vanished. We were able to relax when we went out in public or at school because we knew we wouldn’t have to rush home if she started getting in a bad mood. We didn’t have to hold her down so she didn’t hurt herself. We didn’t have to hear her screams and struggling and sometimes saying she wanted to die. It was our chiropractor who suggested checking her thyroid.
The second major problem he solved for us, occurred at this time when Kami couldn’t hold her head up. I had been seeing this chiropractor since last spring when my back went out. It took me a while to convince Kami to try chiropractic adjustments. At first in the fall, she came with me and just watched me get adjusted. It scared her and she didn’t want to try it. Dr. Rydberg did some little adjustments on her while she sat in her wheelchair. These felt good. Then he got her to lie down on the table and he did some little adjustments on her on the table. These felt better. At each visit he did more and more on her until she was getting full treatments. Soon she loved going to the chiropractor. It was a lot like her energy healer, Lorraine. When Kami was feeling good, we didn’t need to go to Lorraine or Dr. Rydberg for a while. When she started feeling bad, she knew she could go to Lorraine or Dr. Rydberg and she would feel better. I believe this kind of support really kept her going. When she couldn’t hold her head up, we went to see the chiropractor. Dr. Rydberg looked at how she was sitting in her wheelchair. He suggested three things she needed for her chair: better lumbar support, something across her chest, and inserts on the sides to hold her straighter. I took this advice over to the wheelchair adjustment person at the hospital where we got the wheelchair from and he was able to do all these things to her chair that same day. When I put Kami back in her chair with these new adjustments, she miraculously could hold her head up. She took her annoying neck brace off and threw it on the floor. Now she didn’t even have to be reclined and she could move her head around better without the neck brace. I don’t want to say anything bad about the medical staff at the clinic, because they were doing a great job with everything. I just want to say that it takes a village and chiropractors are real doctors too.
Around this time, Gina had a gymnastics meet. Gina and Kami started taking gymnastics at the same time. Gina was six and in Kindergarten and Kami was four and in preschool. This was not ordinary gymnastics. We had some good friends who told us about a very special rhythmic gymnastics coach named Irina. Rhythmic gymnastics is the kind with the ribbon, ball, hoop, clubs, and rope. There were only a few of these coaches around the US. Irina, who was famous in Russia had been coaching in the US for several years. We had the privilege of having our girls take classes from her and her co-coach Natasha who was also a famous coach from the Ukraine. The girls went to gymnastics for three hour sessions two or three days a week. It was intense training and they both loved it. Kami was diagnosed about a year after they started gymnastics. Gina, who was in first grade at the time, had just had her first meet the week before Kami’s diagnosis. Gina continued to do gymnastics throughout Kami’s ordeal. It was very good for Gina to have a strenuous physical routine while our family went through utter chaos. Gina skipped the meet her second grade year because there was too much going on. During Gina’s third grade year, we were able to focus on gymnastics more and Gina was ready for the meet. Gina competed in four areas: ribbon, ball, rope, and floor. She did an excellent job and we were so proud of her. Kami enjoyed watching the meet. It was so sad to see Kami there in her condition when she should have been one of the gymnasts. This was Gina’s day and we were so thankful that Gina had some good things in her life to focus on.
Tuesday, February 17, 2004
Hello everyone,
It has been a while since the last update. Kami has been somewhat stable since January as we have been waiting to start her new chemo. We had to wait three months after radiation before we could start this chemo.
If you recall, the very first thing Kami had after her first surgery in New York was radiation to her upper back where the main tumor was. Then she had lots of chemo and she got much better. The summer after her Kindergarten year, Kami was walking and was down to her original weight. Then unfortunately this past October, tumors spread to her brain and she had to get full brain radiation. In December, tumors grew in her lower back and MRI scans also showed growth in places she had previously been radiated. We had to make a choice. Do we radiate her lower back or try a chemo that would treat everything? We chose the chemo because if we radiated the lower back we would have had to wait three months after radiation before we could do this new chemo and who knows what would have happened in that time. So we are trying this new chemo called R115777. She has only been on it a week so we don’t know much, but at least it seems she doesn’t have any bad side effects from it so far.
Kami has had to be on a lot of decadron again for pain. Her weight is going up again. She has not been able to wear her full body brace because of her weight gain so she got a neck brace to help hold her head straight. Kami loves going to school and does the best she can. It is hard for all of us to see her in this condition again. Her beautiful spirit shines through as she fights her way through this illness. She wakes up everyday with plans for what she wants to do. With each day that goes by, a force stronger than all of us guides our lives. We have long ago given up control. We do the best we can each day and try to hang on to hope. Kami will have an MRI in about two months to see what is happening. This March will be two years since diagnosis.
Gina continues to work hard in school, improving especially in reading and math. We are so proud of her and her accomplishments. She continues to enjoy gymnastics and is starting up tennis as well. Duke is also doing well. He enjoys his daycare very much and is still the Red Power Ranger around the house. We know Kami’s illness is hard on them. We try to explain everything because we feel that is the best way to dispel their fears. We love them so much and hope that somehow we will all get through this.
Blessings to you all and your families,
Kathryne and Francois
February 2004
Page 24