The Beginning of Chemo

We admitted Raylee in the hospital today (6.7.11) and it's after 1:00 am and the last Chemo drug for today is going into Raylee. She is sleeping peacefully. She's had a very long day with lots of testing & waiting. The thing that seems the hardest for her is when the nurses need to change her bandages, especially on her central line. This bandage was changed today & it took 45 minutes with 4 people holding her down. It didn't seem like 4 people was enough......she was screaming as loud as she could the entire time. This was really hard especially because we helped hold her down. She is definitely a fighter and very strong! She was trying to kick the nurse ;)

I had no idea the prep for Chemo took so long & involved so many other things such as urology, audiology, cardiology, and so many labs on her blood & urine first. We had to wait until everything was perfect before the treatment started. They started around 11:30 pm.

We are in a restricted unit at the hospital with strict rules. No more than 4 visitors at a time including parents, no live plants or flowers, no one who is sick with something contagious is allowed, and all the doors remain shut due to the venting system keeping the air clean of germs & bacteria. We are not allowed to take Raylee out of this unit. Sometimes they have us wear masks depending on what is going on. When changing her diapers after Chemo we wear special gloves & dispose of it in a special bag & garbage outside of her room. When handling the IV bag with the Chemo meds the nurse wears special gloves and robes. I'm learning so much about this....stuff I wish I didn't have to know. It's late & I am exhausted. Praying that Raylee has a good day tomorrow.

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At 2:30 am Raylee had a bad reaction to some of the anti-nausea meds. She was screaming, throwing her arms and body around, kicking and trying to leave. She wasn't all the way awake as she seemed to be in a dreamlike state acting out in a terrible nightmare. It took the nurse and I an hour to calm her down. I would compare her to a child waking from anesthesia but will more energy behind the disoriented state. This was rough...one of the most difficult things since the diagnosis. Nothing would comfort her and it was an empty helpless feelings. I am sure Raylee is confused and scared this is all new to her as well. She is too young to comprehend why she keeps going to the hospital and having so many different people examining her and such. This was a tough day but we got through it, she rested, she ate a little, she held down most of her food, her blood counts looked good. She was an onry little thing and was very hard to please but to her doctors she couldn't have had a better day....they were very happy with her day.

We are hanging in there. Jorja misses her sister and has slept in Raylee's bed. She worries about her but we try to keep her busy with the help of grandparents. Today she went swimming with her grandma and cousins.....that made her day! She is definately going to be her sister's keeper.