A week has gone by. It seems like it went fast. The week was filled with just taking care of Karly. When her Ommaya Reservoir is accessed with the chemo, 2 days of yuk follow. She is sick to her stomach, tired from the drugs, can't eat much, has trouble taking her pills, and overall feels crummy. I keep hoping for that one day where she will sit up, feel good, want to eat, and go out to do something. We pushed it a little on Wednesday when Aunt Debbie and Deana came. We had planned to go out to eat and find that perfect wig. The doc had stopped her constant dosing of pain medication while she was sleeping. When she woke up, she was in alot of pain. We let her push her button dose of pain medication several times while waiting on a pill so we could go out. She got herself ready and tried really hard to push through the pain. We got her to the wig store, but it wasn't too much fun. We did find a long blond wig that will need a good stylist to cut it the way Karly wants it. This makes me nervous because I don't know any here, and they get only one try. My friend Pam may have a contact that hopefully will be able to point us in the right direction. We didn't make it to the restaurant, so we ordered it to go and ate in her room. Thursday, was another day for the Ommaya, so it has been bad since then. Please pray for strength. She was wobbly yesterday when she was holding her drink. I have no idea when she will be ready to be an outpatient. Everyday, we wait for a good sign from her that she will be able to handle life on her own. We had a pounding of snow on Saturday...probably about 12"....but I don't know the real amount as reported from the weather service. I got a ride from the NIH police between the Children's Inn and hospital. The Children's Inn offered to house the pediatric nurses last night. It was very thoughtful of them. Today people are here, shoveling and clearing the campus. I am looking forward to my family arriving tonight. I need a reprieve, and she needs the laughter and distractions. Tracy and I hope to make it out tomorrow to do a little shopping. I bought a few things online, but haven't found everything needed yet. I don't know the area very well, but when Pam was here we learned how to get to Target, Kohl's, and Lowe's...three of my favorite stores.
Kelsey was here for a whirlwind visit Tuesday night and Wednesday. She tried to do her manometry appointment, but they got the scope to about her sternum, she had to cough hard, her back spasmed or strained. They had to pull it out and will try again in the future. Since then, her back has been stiff. She completed her study drug and barium swallow. She finished moving back home into her newly renovated room this week. She has appointments here on Tuesday all day, and takes her study drug on Wednesday. I think the 10 hour trip will be hard on her body. The Inn gave us enough rooms to be comfortable. This is a blessing.
Our friends, the Reads, stopped by on Thursday morning on their way to Florida. You would have to know them to know how this works for them. Anyway, Carmel had put the word out that Karly and I could use a laptop in her room so we could Skype home and friends. AND be able to do school later...DVD, CD, papers, etc. I know people donated to this need and would love to know who you are. It has been a complete blessing. We have Skyped several times. She was able to see her hamster, see her brothers and sisters, and enjoy being herself for a short time. This will be a well used tool for us to stay tuned into the world of our friends. Thanks for taking care of this need.
Sorry I don't feel very chatty today. I have a cold or sinus trouble. I have to wear a mask while in her room. I pray this passes quickly. I must go over and see her now. Catch up later. Love to all of you, Mom