Headstrong Little Princess

I haven't been able to post anything for a few days; I got really sick this last weekend and yesterday was a day I hope I forget. One thing about Raylee being so young and having cancer is she probably won't remember most of this and probably too young to get super depressed about it. We came home from the hospital last Friday. The feeling to leave the hospital is one of relief, however, with Raylee's situation we knew caring for her at home would be harder than if we were at the hospital. There she receives fluids constantly with most her medications going through the IV line. At home, we need to convince her to eat and drink, and to take all her medications orally--try getting a head strong child who is almost 3-years-old to take lots of meds twice to 4 times a day--she refuses and has to be held down to take them. This makes her upset and it doesn't feel right to hold her down....but she needs them to help make her feel better and to help fight off infections. Anyway the ride home was difficult and we learned a huge lesson...always take the puke bucket with us in the car, put towels under her carseat to protect the seat, travel with extra towels and baby wipes. I don't think I have to describe what happened. Driving home was the beginning of a very long and unpredictable weekend.

Once home we tried our best to organize and manage many different anti-nausea meds, several different antibiotics, and several other meds with a time schedule. In reading the side effects to the meds all of them can cause nausea, vomiting, and loss of appetite. This doesn't make sense because even the anti-nausea meds have this side effect, yet we take them to help manage nausea, vomiting, and loss of appetite--I just don't get it ;) . All I can say is Raylee has become an expert puker! She now associates throwing up with taking medicine. She started saying "it will make me throw up" when we give her meds. Then sure enough....she gaged them down until she threw up. I have a weak stomach...so being part of this makes my stomach turn. A weakness I've always had but need to get over fast! .............but I didn't get over it fast enough. Friday evening to Sunday morning I was really sick. I made sure Raylee and I were never in the same room. It could have been my weak stomach, or, just built up fatigue and stress and my body was just warn out. Jerry took care of he girls this entire time, he is a really great father and always watches out for them.

Yesterday was a rough day of hell. Raylee was eating and drinking just fine but every time I gave her medicine she threw up. She has mastered the gag reflex to do exactly what she wants. She doesn't want any medicine, so when it's forced she ends up getting her way anyway. Explaining to her the medicine will help her feel better goes in one ear and out the other. She covers her mouth, hides her face, and puts up a big fight about taking these. She is not going to give in. She is stubborn...a fighter! These are good traits to have in fighting cancer, but when it comes to antibiotics that prevent a pneumonia that is common in cancer patients after chemo.....it makes being so stubborn-really scary. Calling the doctor didn't seem to help they said to give her saline crackers 30 minutes before the medicine. So when all else fails.....call the pharmisist! I found out a trick nurses use at the hospital--they flavor oral meds with snowcone syrup and the hospital pharmacy sales the favoring.....it is just simple snowcone favoring 5X concentrated. So I went back to the hospital yesterday evening to buy the flavoring. I drove there with the hardest song from Def Tones blasting from my car--I was super mad and frustrated, desperate for a way to make this easier for my baby! This isn't fair....it shouldn't be so hard for Raylee, all she wants to do is play and be a little kid. She says, "I don't want medicine I am better." This is an age full of fun discovery and adventure....Raylee is going to have a rough summer--all she wants to do is play but she gets super tired.

By the way....the snowcone flavoring did not work....not yet anyway. Raylee is too smart to be fooled. Since today is a new day, we are going to outsmart this smartie pants. Today Raylee is going to be tricked in taking these meds or she's getting them in an IV. The pharmisist also said to add her meds in juice....tried this last night before she went to bed and she drank it without knowing and held everything down. So today we will attempt to manipulate the headstrong little princess! :)