Sunday (6/20/99)
After church we left home for Pittsburgh. It took about 6 hours to get to Weatherbury Farm. We stopped at Bob Evans and ate lunch and we stopped for ice cream along the way. Krissy and I slept most of the way here while mommy drove through the mountains. Krissy doesn't like heights. When we got here, mommy kind of got lost, but we found out we had just past our turn a few miles back. When we pulled into the drive way we were met by "Gruff" the billy goat. They have him chained to the fence in front. I don't think he likes me much. (I will put a picture of Gruff on the page soon.) We met Marcy and Dale, who own the farm. They showed us to our room which is called Reba's room. It is a really neat farm house. They have a bunch of cats, cows, geese, ducks, and guineas (sp?). Once we got settled in Krissy and I got to feed the baby cows, Arial and Chance, with big bottles. They drank the whole bottle in less than a minute and Chance tried to steal Arial's bottle after he finished his. After that we went and drove around a little bit and went to McDonalds for dinner. Then we came home and went to bed.
Monday (6/21/99)
Mommy had to take care of getting things set up for my surgery and we had to do all the pre-op stuff. Mommy took us to the mall and Krissy and I got new matching bathing suits on sale. When we got back to the farm we all went swimming. Even mommy. Mommy took us out to eat crab legs, because she had promised to, and then we took a test drive into the hospital so we wouldn't get lost in the morning. I fell asleep. When we got home I took my medicine and went right to sleep.
Tuesday (6/22/99) (Renee)
I am writing today's log because Kimmy doesn't quite feel up to it, although she sat here a few minutes ago and told me what she wanted in it. We had to be at the hospital at 5:30 in the morning, meaning we left here at 4:30am. I of course, got a little lost, but quickly found our way (so much for a test drive). Kim's surgery started a little late, but we know how that goes. It really didn't take all the long in the operating room. Dr. Rosen removed a few lesions and injected those sites and the other lesions he left in and just injected with the cidofovir. Dr. Rosen was very pleased with how well the surgery went. Kimmy was in recovery a little longer than usual because they wanted her O2 to be at 97% before they sent her to the floor. Dr. Rosen wants to do surgery again in 2 weeks and will inject additional areas of diseased tissue at that time as well as remove or treat any new papilloma that has come up. He will also treat/take a look the trachea at that time, which he did not treat today. Today he concentrated on the vocal cords (true and false) and the subglottis. Kimmy says that her throat doesn't hurt as much as it usually does and after surgery she thought she was really hungry. Once I got her some food, she realized that she really doesn't feel very well and is a little sick to her stomach. She is also running a low grade fever, but it is not stopping her at all. In fact, she is outside right now on the front porch. The only really hard thing for her right now is that she was told she was on voice rest and not to use her voice for a few days. She is not used to this. She has always used her voice after surgery, so she keeps catching herself. We are going to make an early night of it tonight and don't have any real plans for tomorrow except let her rest and recover.
Wednesday (6/30/99) (Kim)
Since last week we have done a lot of stuff. Mommy took us horseback riding and we went on a trail through the mountains. It was a lot of fun and the guy who owns the horses said for me to come back and he would take me on a ride for free. Mommy had the flu on Saturday, so Krissy and I swam all day. When she felt better she took us to the movie. On Sunday we went to church. On Monday we went to see the doctor for follow-up and because I'm making a lot of noise in my sleep. He said I look okay for now and that we should keep my surgery for July 6. After my doctors appointment we went and rode the Good Ship Lollipop. It was a lot of fun and we took a lot of pictures. On Tuesday we had to go get my blood drawn. I hate getting blood drawn. When we got back my daddy, Matt, and Megan had come in for a surprise visit. We swam outside for a little while and then we went to Pittsburgh to show them around. Kristina was feeling homesick so she went home with daddy last night. Mommy says we can go to the movie tonight. Right now my voice is gone again so I know it is almost time for surgery again.
Thursday (7/15/99) (Kim)
Sorry I haven't updated my page in a while, but a lot has happened in the past two weeks. My 4th of July was a lot of fun. We went to a picnic at the church we have been attending and then went to fireworks in West Virginia. It was cool because the fireworks went off between two mountains and the sound bounced off the mountains. My friend Stephanie from church also spent the night on July 4th.
My surgery was July 6th. I also had tickets to the All That Music and More Festival for that night that I didn't get to use because something happened in surgery and I had to be in the hospital for the rest of the week. While I was in surgery somehow I got holes in my lungs and they had to put chest tubes in on each side. It really hurt bad. They gave me a machine that let me give myself medicine for the pain. When I woke up from surgery I couldn't hardly open my eyes because they were swollen shut. My mom said that my whole face, neck and chest were all swollen. All the swelling went down after a few days. She said it was because all the air from my lungs went into my body and made me swell up. They pulled the tubes out of my chest on Thursday and I got to go home on Friday.
We moved from the farm to the Ronald McDonald House in Pittsburgh because it was closer and because I am not allowed to be in the mountains or do a lot of physical activity for a whole month. Dr. Rosen has also put me on a one week surgery schedule starting next week. Dr. Rosen also says that he thinks the medicine is starting to work. I gave him a big thumbs up on that.
Mom's Note
Kim mentions that she developed holes in her lungs. It is actually called a bilateral pneumothorax. This condition does not happen often, but it is one of the risks associated with general anesthesia. The last thing I want is for parents to become over concerned about this happening to their child. As an example of how rare it is, one doctor said that in over 20 years of doing anesthesia, this was only the 2nd time he had seen it. I do want to say that I thank God that Kimmy has such a wonderful surgical team that was able to pull her through this. We owe them her life.
Sunday (7/18/99) (Kim)
We haven't been doing much since I updated the page last. Mostly we are staying around the house and keeping quiet or going to appointments. Yesterday I got a big package of all kinds of stuff from my mom's work. They sent me art stuff, books, a Pooh and Tigger shirt and a really cool bear. I can go on the internet and buy the bear special clothes. They also sent me Toys-R-Us money and today mom took me out to buy things at Toys-R-Us. I got myself a big Tigger stuffed animal, a friend link, stickers, and a beanie art set. Mom and I are having dinner with another RRP patient and his girlfriend tomorrow night and I have surgery scheduled for Tuesday early in the morning again. The other RRP patient also sees Dr. Rosen. My sides don't hurt as bad anymore and they have almost healed up. I don't think the scars on my sides will be too bad -- I hope.
Saturday 7/25/99 (Kim)
I had surgery again on Tuesday the 21st. It went really good. Dr. Rosen said that my larynx didn't have any papilloma on it and that the medicine is working. I have to have surgery again in two weeks and have the injections again. Then after I see him for follow-up in clinic, if everything is okay, I can go home. My great grandmother and my grandmother are coming out to see me today and staying over night. Mom and I are going to show them around Pittsburgh a little bit. Mom says that she is still a little worried because I am making noise at night when I sleep and because I get out of breath sometimes. I usually just take my rescue inhaler when I get out of breath and I am okay. My next surgery will be next Friday. I am taking my two favorate beanie babies in with me, Hope and Peace. They are my good luck bears.
Sunday 8/29 (Kim)
It has been a whole month since my last surgery and right now I am not having any problems at all. My last surgery was July 30th and Dr. Rosen was able to treat the trachea growths at that time. He said that everything looked great. I was making some noise when I was breathing at night, but that has all gone away now. I got checked again on August 16th and everything still looked clear. There was no active disease. I was hoping I could cheerlead this year, but Dr. Rosen said it was not a good idea because it might make the papilloma growths come back. School starts on Tuesday and I have an appointment at Johns Hopkins to meet Dr. Tunkel on Tuesday. Mom says that although we are still going to see Dr. Rosen, we are making arrangements with Dr. Tunkel so if I have an emergency we have a doctor who is close by who knows me. I don't have to go back to Pittsburgh until September 13th for just a normal check-up with Dr. Rosen.
Saturday 11/27/99
Well, it has been a long time since I last updated my page. I am sorry it took so long. Since my last update, I think I have had surgery 3 more times. Maybe only 2 times. I am scheduled to go back to Pittsburgh again on December the 2nd. I am doing ok right now, so hopefully I won't get any bad news from Dr. Rosen.
Saturday 12/03/99
I went to Pittsburgh for my appointment with Dr. Rosen yesterday. I got really great news. I expected to have surgery today, but he told me that even though I had some active papilloma growth, I was doing well enough that I didn't have to have surgery this visit. So, I got to come home. I don't have to go back to Pittsburgh again until January 20th and the next time I see Dr. Rosen, I will be a teenager!
Thursday 12/23/99
I am happy to say that everything is pretty stable right now, although my voice is kinda bad again. Right now, I am still scheduled for surgery on the 21st of January. I will let you know how things go after that. Also, I hurt my arm at school the other day. I am going now, to get it checked out. Hopefully it is not broken.
Thursday 12/03/00
Well, it has been almost a year since I last updated the page. I have had several surgeries in that time, 6 I think. The most recent was on Oct. 27. The surgery went really well. There was only one small patch of disease to remove. Right now, I am not scheduled to go back to Dr. Rosen again until just after Christmas, Dec. 28th I think.