Inpatient Day -3

WBC- 1.3
Hemoglobin- 10.0
Platelets- 14
ANC- 1.2
Weight today- 53.46

We had a pretty good night again last night. We were up every 2 hours to go to the bathroom and there was one time we were up between the 2 hour block. She was really good to get up and go and then settle down and go right back to sleep. I am a bit tired and a nap sure sounds good, but Ariauna thinks naps are for babies. Crazy girl! We got up today about 8:00 and ordered her some chocolate chip pancakes. Big mistake, I guess if you want to order something for breakfast you better order it an hour before you want it. It took room service an hour to get it here. I have tried really hard since the day she didn't feel very good to give her medicines to her a little bit slower and not until she has something in her stomach. We also had them order up some cherry syrup and that has helped with the really nasty one she has to take. Ariauna's blood work all came back in the no replacements needed range today. Yay! They did start a couple of new medicines today that they will give her through her Hickman line. One is called Sirolimus and the other is MMF. One of them is to help her body not reject the transplant and the other is to help protect her from getting GVHD (Graft Versus Host Disease). MMF she will take for 30 days and the Sirolimus she will take for a long time. The funny thing is one of them will make her hairy, hairy like a new baby is. Soft and light hair everywhere. I told her it will make her look like a monkey, she just laughs. We finally got her breakfast and started administering her medicines by mouth slowly. I think by noon we finally had them all in. We need to do something different tomorrow to get breakfast a bit earlier. The doctors did rounds this morning and there really was nothing new to tell us, just that she is doing great so far and the plan was just to do another round of chemo today. They started her chemo at 10:00 again and it was done by 12:00. Here is Ari and her nurse Ann wearing her chemo apparel.

We got a visit today from a different physical therapist named Elisabeth. She brought with her a fun game of bowling, Ariauna was very excited. The trick to this game of bowling was that she had to help set up the game and had to squat with her legs to set them up, and also in order to actually roll the ball she had to do some kind of an exercise first. Here they are playing the game of bowling in our room.

 (Oh and Jeni and Alice, have I mentioned lately how much everyone loves our 1000 paper cranes?  Or the huge paper cranes on the counter? Every time someone walks in her room they comment on how beautiful our rainbow of cranes is and who in the world would have made that for us. We love it and are so grateful for them. They definitely make our room more beautiful.)

Ariauna had an absolute blast playing with Elisabeth. Here are the final scores of the game. As you can see, Ariauna got two strikes and won the game :-)

Today was the day Ariauna had to have her Hickman line dressing changed too. Inpatient they will change it every 4 days. It is looking so much better underneath and not as pink around it.

We spent the rest of the afternoon giving Ariauna a shower, playing a game of garbage, and working on a cute little sewing activity she got in a love chain package. We had a good afternoon! She ate pretty average today, didn't eat much of her choco chip pancakes for breakfast, ate her chicken strips and fries pretty good for lunch, and ate her spaghetti and meatballs pretty good. I am grateful her appetite has been okay. Everyday I can keep her off TPN and Lipids makes me happy :-) I had promised Ariauna we would relax tonight and have a movie night, so I headed down to pop some popcorn in the microwave and we watched...

I had not watched it for years and years. Ariauna liked all the music it plays in the movie. We had a great night just snuggling and spending time together. Today was a "Rainbow" day from sun up until sun down. I am grateful to have these happy days and hope we can have a few more!!

P.S. We thought her IV pole at Primary Children's hospital in March/April had a lot of stuff hooked to it, but that was nothing compared to the contraption she has here.

Today I am thankful for:  My sweet Ariauna and the smile that she always has, I am so scared for the days she may not have that smile. I don't know if I have ever seen a day in my life that she was not smiling. I am hoping that even on the toughest of days, I can get her to crack a tiny smile at least. I am grateful for my sister and her girls for taking Sadie and Jaxon tonight so that Jerry could do his scout backpacking trip. I am grateful to the staff at this hospital for making these long boring days stuck in a room more enjoyable and pleasant for Ariauna and myself. I am thankful for all the love, prayers and support at home and I am especially grateful for my Heavenly Father who hears and answers my prayers.