Team Jaylie: Chemo Day 2 & 3

(Written Saturday Sept. 17th) Not too good of a day today. Its Saturday night, Jaylie just fell asleep. My last post I wrote Friday morning while Jaylie was still asleep. Friday (yesterday) was a good day. Jaylie felt well and ate well. My mom dropped the kids of at my friend Heathers house and came up to the hospital. (Thank you Heather!) My mom walked over and got us some Greek food for lunch at Tinos that just opened up that same day :) I love Greek food! It was really good and Jaylie loves the meat surprisingly, so she ate some of that and then some of her lunch. She loves hummus too. She has not eaten meat since radiation started. Sometimes chicken nuggets but that is it. She wont touch anything else, but does like the Greek meat. She ate a great breakfast and lunch which was surprising because the chemo makes you lose your appetite and makes everything taste metallic. We went to the library and picked out a book and some dvd's. We watched High School Musical together. Jaylie and I had not seen it before, it was funny and cute. We have been wanting to watch it together for a while now. Kip got off work early and picked the kids up and came up to the hospital. Jaylie was so excited that they were coming, she asked for them all day. They got her early afternoon and we were excited to see them! We went to the playroom for a little bit and Crew loved the little pretend MRI machine. Kip moved him in there and he thought it was so fun. Then we went outside and played in the maze and by the pond. Jaylie got tired pretty fast so she and Kip went back up to the room and my mom and I played with the kids on the grass. They had fun running around and playing. I miss them. Its weird being away from them all day. We went back up to the room and my Mom took the kids home with her. When I talked to her that night she said they were good and had fun. They love going to my parents house, its fun and they love my parents and my brother and sister. I never have to worry when they are there, its so nice. I'm so glad I have them. Jaylie, Kip and I hung out for a little bit, did a little school work, and then she played Disney Scene It with Kip that we got from the play room. She got a chemo called cyclophosphomide today and when the nurse was unhooking it from the iv pole when it was done it splattered in her eye! Chemo is nasty stuff, the nurses wear special gowns and gloves when dealing with chemo and you have to flush your skin or eyes with water for over 30 minutes if it gets on you. Luckily she wears contacts so she took it out right away and then went down to the ER to flush it. I was worried for her, but at the same time it made Kip and I sick to think that this is the same stuff we are putting into Jaylie's body. But we realize that this is the way to kill all the cancer cells and we for sure want to do that. I would rather make her sick killing the cells than have the cells and make her sick and kill her. Anyways, Jaylie did well last night. Kip stayed with her and said there was a baby next door that was crying for like an hour in the middle of the night and both him and Jaylie could not sleep because of it. Luckily the baby fell asleep and so did they. The baby started crying again this morning for a couple minutes and Jaylie said "Oh no, not again." I thought that was funny.

Today (Saturday) was a harder day for Jaylie. She has been really tired all day and has not eaten much at all, which is normal. She wanted to stay in bed or on the couch a lot today and watch movies. She started feeling bad but didn't tell us, I could tell something was wrong so I kept asking her and she kept saying she was fine. She started throwing up everywhere, it got all over her, her bed and her Hello Kitty blanket and pillow. Next time I will know to bring 2 blankets and pillows just in case she throws up on them. It was so sad and she was really upset and crying. She calmed down after we got everything cleaned up and got her back in bed. We had a talk about telling us when she is feeling sick, for some reason she doesn't ever tell us till after she throws up. The nurse gave her ativan (the same drug she gets for anxiety when her port is accessed, it also helps with nausea). She started feeling better after that. She got cyclophosphomide again today. Then we made a trip to the library for a new dvd and went to the playroom on the 3rd floor to get a henna tattoo. The hospital always has fun little activities and things going on for the kids. The artists were really good and Jaylie loved hers. Kip and I were able to be with her all day today because my mom had the kids. Anyways, Kip left later to see the kids and meet them at home. Jaylie and I watched High School Musical 2 for a little bit but she was feeling really tired so we stopped it. She got in bed and I could tell she wasn't feeling good again but she said she was fine. I tried to get her to eat and drink but she didn't want to. She took one bite and then threw up all over the place again, it was so sad. She was upset and crying and hurting. I asked her why she didn't tell me she was feeling sick, because I asked her a lot if she was sick and she kept saying no. She said she was scared to tell me. That broke my heart that she is so scared. It took all I had to keep from balling right then, some tears fell but I held it together somehow. We had a long talk about telling me how she feels and that it is important that I know when she is sick or hurting. Poor little girl, its so hard to see her like this, it kills me. The nurse gave her some more ativan but she didn't eat or drink anything. She fell asleep fast though.

(Written on Sunday Sept. 18th) I never posted what I wrote last night so figured I would just add to it this morning.

Jaylie had a good night. They were only making her pee every 3 hours so it wasn't a bad night at all. We both slept as well as you can in a hospital :) We are so excited to go home! Hopefully we will be able to go soon. They said she can go home as long as she is keeping some fluids down. I am scared she won't be able to because she is still sick. She woke up this morning not feeling well so we gave her some ativan. She still gets zofran around the clock too, but the Cisplatin she had the first day is known to cause nausea like this. The ativan doesn't seem to be helping too much. She says her tummy feels a little better but she won't eat or drink still. I got her to take 2 sips of water about ten minutes apart so I will keep having her take a sip every few minutes. The last 2 times she ate or drank anything she ended up throwing up so I worry she will just keep doing that. They said for the next 2 days she will probably be nautious and not eat but as long as she is getting fluids she will be ok and start eating again after a couple days. They said if she is throwing up and not getting fluids then we have to bring her back in and get her on iv fluids. We go in to the clinic tomorrow to get her Nulasta shot, which helps her counts and the on call doctor said if she needs fluids tomorrow they could hook her up and give her some there. Hopefully she will start feeling better and will be fine. I know I put a lot of details in here, sorry if they bore you. I want it all for my record.