I’m leaving New York Wednesday April 22 for 10 days! I have to return to New York May 3-9 for her first round of antibody IV3F8 treatment. I heard it is quite painful and there could be a lot of unexpected complications that accompany the treatment therefore Ralph is traveling with me. I’ll keep everyone posted.
Hello everyone,
WOW-this past week has really been the worst week thus far. Paris really became sick after the first day of treatment on Monday. The 3 doses of Chemo (carbo, temodar and irenotecan) for 5 straight days really affected her. A specific oral chemo temodar is a gel cap pill that children are usally able to swallow, however Paris’ age doesn’t help her so they have to mix the powder with apple juice but just enough to fill the syringe to ensure that she gets the correct dose. Well the first attempt was a disaster, as soon as it hit her mouth the taste was so potent that she threw everything up within seconds. They tried again a while later and it stayed down after many dry heives. On Tuesday we repeated the same thing. I finally said place a NG tube so that she wouldn’t tase it. She struggled for 25 minutes and then she pulled it out. We repeated it again and then she pulled it out at home later that night. We had to put another one in on Wednesday which she finally left alone and I pulled it out on Sunday. I also used it to give her zofran, a anti-nausa medication which has a horrible taste as well. This past week has been horrible, Paris constantly throwing up-everywhere-daily actually hourly, very tired and moody. Today Sunday was the first day that she had a burst of energy and no vomiting. She seems to be doing a bit better, hopefully it will continue for the next 3 weeks. She lost more weight down to about 14 1/2 pounds now. We again have at home nurse care twice a week to take blood counts and I access her port, give her all of the medication plus neupagen through her port daily (exactly the same as last year). The nurse called and asked if I had any questions and if I needed a refresher course -I just laughed… Unfortunately, I’m a pro, I told her.
We are loosing hair again but we are gaining teeth. Go figure!
Thanks again for the ongoing thoughts, prayers and support.