Its been a while since I've written anything so I apologize. It all goes back to my 'no news is good news(usually ;))'
Anyway, after we got home 2 weeks ago, Gracie was still very weak and puking. it took a few days to get over the puking but she did and the feeds have been going pretty well. I have been running them about 20 hours a day at 50 or 60 ml per hour. She only puked once this week and I thought maybe she would gain some but she hasn't. she has even lost 1/2 lb. :( I think it is because she burns alot of calories crying from pain or laughing when she feels ok. She had a few days where she could hardly walk but the last 4-5 days she has done well with everything and is even starting to eat small amounts. :) but then we will start all over with the next round and be back in the same boat... We will drive down tomorrow to be admitted and start Monday with the IL-2 that runs continuously for 96 hours. She did very well with this in round 2 so we are hoping for the same. the second week she will have the IL-2 for 96 hours again and the ch14.18 together, this was the week that was hardest on her with round 2, (and all the rounds so far) We are praying that with the charnge to fentanyl, that will help. hopefully she won't have the same issues with blood pressures. This will be our last 2 week hospital course and then the next course will be one week in May. after that she will have only accutane at home, and finish with the immunotherapy stage mid June. It is coming quickly and we feel very blessed to be nearing the end of treatment. Please as always, keep Gracie in your prayers that she can gain weight and strength! God bless you