It's called "Encephalopathy"

That is the official name of the side effect Summer has had the past two days. Today it was not as intense as yesterday. She played and played all morning, eating too - Cheerios, dried strawberries, cottage cheese, a bite of tomato and a few bites of chicken. Then after they started the Ifosmafide, I watched her looking for any sign of disorientation since it is the one that causes it. About an hour and a half into it, I notice her kind of lean to the side when sitting on the couch so I decided it was time for us to get into bed and watch TV. Prior to that, she was a happy and playful little monkey. About 5 minutes or so after we got in the bed, she curled up and started sucking her thumb disregarding her favorite cartoon. I knew she was starting to feel the effects of the drug then. She slept and then stirred a little. I noticed some twitching in her limbs, so I called the nurse to let her know. She saw some rapid eye movement / blinking which she said she also saw yesterday. So, they went to tell the doctor and the get Benadryl ready in case it got worse. She starting whining a little, but not nearly as much as yesterday. Her eyebrows were moving up and down and the twitching was more noticeable than yesterday, but maybe that is because other than that she was laying still. Yesterday she was swaying and moving around more when the encephalopathy occurred. Today it has lasted longer even after they gave her the Benadryl. She will sleep and periodically wake up and twitch or cry then drift back off. She also opens her eyes and looks around a little, but doesn't really say anything. Today she has been alert enough to wake herself up when she needs to pee so that has been a blessing. She has only thrown up once and that was about an hour or two ago. I could hear it coming up and got the bag, but didn't get her up fast enough to make it all in the bag. Thankfully she had a pad under her so we didn't have to completely change the bedding.

That pretty much sums up her day so far. She is still coming in and out of consciousness, sucking away on her thumb. It has a new sore. And, the old one is back! I hope they do not actually start hurting her or looking too raw. That thumb has been well used this week for sure. I wonder if she will put a bandaid on it next week so it will get better. I'll just have to wait and see I guess. That's the way life is anyways. You never know what is going to happen, even tomorrow. I mean you may have plans, but something could always happen to completely change them. I never imagined this is the life I would be living, but here I am. I'm not going to let it get me down though. When life gives me lemons, you can be sure I'm going to try my best to make lemonade!!!