Say that title three times fast! Ok, wait, I just did it and it was easy. Nevermind.
This is going to be a long post. If you do not want the play by play, here is a summary. She finished the 2nd dose of Mtx. It went horrible, but she did it. She did not get mouth sores again this time and we actually had a hospital free weekend for memorial day!
So, last Friday Hannah started the 2nd dose of high dose methotrexate. I was nervous to start it again so soon. She hadn't even been home for a week from the last hospital stay. That one was just from the side effects of the first dose!
The first day went perfect. They hooked her up to a saline drip and she quickly produced the necessary amount of pee to start her methotrexate 24 hour drip. This time, Hannah was finally not in isolation. That means we were able to come out of her room. The cancer floor has a mini playroom and a bike riding area. It is really pretty cute to see little kids riding around the hallway's. Hannah loves to see into other kid's rooms. She doesn't care at all about privacy!
She woke up on Saturday really grumpy. We made it passed that and then I did the unthinkable.
Hannah is hooked up to three different tubes that all go to a big medical tower on wheels. It holds the medicine bags and syringes that get pumped into her tubes. The tubes attach to the needle that goes into the port in her chest. We constantly tell her to be careful of her tubes. For the most part she is. If they pull a little too much, like if she is moving faster than you are moving her tower, or if she rolls on them in her sleep, they pull and it hurts.
Keeping this in mind, here is what I did. Hannah was sitting in a chair and raised her arms for me to pick her up. I did. What I didn't see was her tubes were caught in the crook of the chair. I lifted her up and the needle pulled right out of her chest. Luckily, two nurses were walking in at that moment. Methotrexate, not a drug you want anywhere on your skin or in surrounding veins or tissue, was spilling down her tummy into her belly button. It is really important that the needle pulled right out, instead of half out, half in. I didn't know this at the time. Our nurse was checking that out. I thought we should be stopping the Mtx from spilling down her bare skin. I yelled at our poor nurse. She yelled back. We were all scared.
Hannah was screaming "It's a bummer, it's a bummer!" over and over. It was such a mix of the cutest thing you ever heard and the saddest. She had a small cut from the needle underneath her port. We got that and the chemo drug cleaned up. The next hurdle was getting a new needle back in and the chemo, which is a timed deal, back on schedule! They determined the needle came out clean and gave us the go ahead. The problem was how to put the needle back in without numbing cream, as it takes at least a full hour to numb and 30 minutes for the fast stuff. The decided to do a lidocaine shot. It doesn't have a needle. You just press it down, it lets off a compressor sound, and boom; area numb! Hannah was a bit scared, but braved through it. Infact, she did better than me the whole thing through. I cried like a baby for about an hour after that. Tears just wouldn't stop. I felt so damn bad. You should have seen how great Hannah did, though. What an amazing girl.
Unfortunately, our stay did not get any easier from there. The last time Hannah was in the hospital she was on a morphine drip. She was still in the weaning process during this hospital stay. Based on Hannah's reaction to a narcotic they gave her previously, for back poke's, and the behaviour we saw during the last two hospital stays, we think Hannah might have adverse reactions to narcotics. Not having tied it all together yet, it was hard to see what we had coming.
Hannah had an almost base line of anger. Even if she could be distracted or had some good moments, almost any little thing would set her off. She wouldn't just get angry, she seemed crazy. You could have offered her all of Toy R Us during the middle of a fit and it wouldn't have mattered. She was lost to us. She would get so mad, she would be kicking and hitting and throwing anything or anybody. This happened several times a day and into the nights. The psych team was called down. They determined she needed less people around her and to give her space with nothing to throw near her. Without that, she started to pull her tubes, tried to tip over her tower, oh, and literally splash pee at her nurse. After the second day of this crazy, to protect her from herself, they strapped her arms to her bed. It only lasted two hours. It wasn't anyone's best plan and I think her nurses were as upset as me! However, her doctors are going over it all to have a real plan ready if she has a reaction like that again.
Because of the mouth sores, the gave Hannah extra of the rescue drug, Leucovorin. It helps the methotrexate to exist the body faster. On Sunday, they drew her labs and her Mtx level was at .79. It has to be .01 to go home. Monday they took labs and I though, why bother? She came back at .08! After the h. e. double hockey sticks the day before had been, I was SO excited to go home.
What I was really dreading was whether or not she would get those mouth sores. I don't know how we could have done another week on a morphine drip! Thank god a million times over, she did not get them very bad this time. A few on her tongue, but nothing hospital worthy.
As much fun as that was, you will be excited to hear that on Friday, if she makes counts we get to do it all over again. We are glass half full kind of girls, so I will say this; It is going to be better this time! So there, cancer! (I am sticking my tongue out in a very juvenile fashion)
Some of the better moments.
