Favorite Hannah Picture

Favorite Hannah Picture
"Yes, the park!"

Hannah Ballerina

Hannah Ballerina

Play Time

Play Time
"Go super fast!"

Hannah's Room

Hannah's Room

Happier Hannah

Happier Hannah

Hannah sleeping 4-13-10

Hannah sleeping 4-13-10

Preschool Friend's Art

Preschool Friend's Art
Yeah! Friends!

Tuesday, May 31, 2011

2nd Dose Done

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.

Tuesday, May 17, 2011

Back home for a bit

Hannah got to come home this weekend. She is doing better. Still tired but healing. Starting this chemo after a year of heavy duty front line treatment is just punishing on already worn out bone marrow. However, we made it through the first round of HD Mtx. Friday morning, if her counts are good, she will be admitted for the second dose.

I knew this would be tough and it is. We are going to push through and get this done. She needs this chemo, as awful as it is.

I can't really elaborate more than this. I just break right down if I think about how things are going. I'm just going to concentrate on the goal. Please, pray for us going through the next round. Love you all!

Friday, May 13, 2011

Post Removed

I updated about Hannah yesterday and now the entire post is missing. I don't have time to figure it out, but if anyone knows how to fix it, please let me know!

Hannah is still in the hospital. The mouth sores, which are little ulcers, have covered her tongue, gone down her throat and are throughout her GI tract. She has been in horrible pain and we have struggled to figure out where her behaviour is a reaction to pain medicine or an indication that she needs more. After several days it became clear she needed much more.

She is actually doing better today. Still a little cranky, but doesn't seem to be in as much pain.

Thank you all for your support.

Thursday, May 12, 2011

She is still @ Children's

I have to make this brief and will try to give more details later. Hannah is still in the hospital. She has really been struggling this week. We have had days too bad to talk about. The mouth sores (which are little ulcers) are covering her tongue, gone down her throat, and through her GI tract. It is horrifically painful.

Half our trouble is because she is so young. When in pain, she doesn't always vocalize, she goes a little crazy. She screams, kicks, hits, spits, pulls at her tubes, anything to change what is happening inside. She also has that reaction as a side effect to some of the pain medicine they give her. Figuring out how much pain medicine and which one to use has been a trial and error at her expense. This is going to sound crude but it fits on the most basic level. This all SUCKS!

The good news is her fever is gone. Also, she seems to be stabilizing on pain and erratic behavior today. Her counts look like they are trending upward so hopefully she is on the mend.

Thank you all so much for your continued support and prayers. We have needed them!

Friday, May 6, 2011

Heading Back to Children's

Hannah has been struggling with stomach pain and mouth sores that cover the inside of her mouth and have traveled down her throat. Last night was so hard.

It is a common side effect of the methotrexate. The real name for it is mucositis and the sores are little ulcers that can occur anywhere in the GI tract.

It can be an extremely painful thing and if pain cannot be controlled by oxycodone, then she will need to be readmitted for a morphine drip. Her stomach pains could also be mucositis that have traveled down to her stomach. Sigh.

We are both exhausted. Hopefully, this will be resolved soon and she will be pain free. It is so miserable to watch.

Thursday, May 5, 2011

Awesome News!

Hannah passed the high dose methotrexate out of her system a day earlier than even her doctors expected! That is awesome news for Hannah, as the risk of side effects greatly increases the longer it takes to clear the drug. I am extremely excited about this!

Yeah Hannah!!!!!

I will do a proper post with more details this evening. Thank you all for your prayers and support.