Wednesday, April 22, 2009

long post...sorry...

This is a REALLY LONG post...I'm sorry.

Okay, I have seen the doctor and we have a plan...

If Kaidan doesn't get any more fevers we will be going home tomorrow morning. Right now she is back in the 99.3-99.5 range, so we'll see what happens.

I voiced my concerns about her counts having a hard time recovering and so they are going to run a test to see how her body breaks down the oral chemo that she gets. I had never heard of this test before, and I'm a little frustrated that it hasn't been done sooner. She is going to check with Kaidan's primary doctor to make sure he hasn't run the test in the past, but since I've never heard of it I'm assuming he hasn't. (I know, I ASSUME is to make an ASS out of U and ME :)) I told her I doubted he had, but she said he could have done it and just not told me...unlikely, but maybe I'm too critical...we'll see. She will let me know tomorrow if he has done it or not and we will go from there. She said only about 1 in 200 kids have a problem breaking down the chemo. They break it down much slower than normal, so the dose for their weight is actually way too much for their system. At least if Kaidan has this, we could adjust accordingly.

The other concern I have had is the rapid decline of Kaidan's platelets since Friday. She suggested that maybe we should do a bone marrow biopsy to rule out relapse. She does NOT think that is what it is, but we will see what Kaidan's platelet count is tomorrow and decide from there. Just typing that makes me have a feeling in my chest that I can't even describe. It just makes me sick, even though I know it is VERY unlikely. I would rather be safe.

So, that is the plan from a medical stand point. I have been pleased with our stay up here because we have the same resident we had last week (the only resident I have ever really liked) and the doctor on the floor is one of my favorites.

As I was typing this, the nurse came in to do the test to see how Kaidan metabolizes the chemo...interesting...I knew it had never been done before. It is things like this that are so frustrating. How can we feel like she is getting the BEST care possible when things are overlooked for so long. I have been questioning the doctors as to why her counts have such a hard time stabilizing for several months. There is just no reason why this test shouldn't have been done a long time ago. I hope that it shows something so that we can get her dosage right and figure things out.

Okay...enough of the medical stuff. I have a couple of stories that I want to tell you about. First of all, yesterday was a hard day for me (as if you couldn't tell). For the first time ever, Cash was really upset about us being at the hospital. He was BEGGING me to come home with him and then he asked Nate the whole way home why Kaidan and Mom couldn't come home. That was really hard for me. No one should have to go through this...not the child with the illness, and not their siblings! It was tough, I just felt so bad that we couldn't all be together. Having the boys up here today has actually been okay. Everyone is behaving and we are together (Nate is at work and Pres is at school). It's almost like being at home...not really :) Anyway, it is going better than I thought it would. In fact, my sister was going to come get the boys, but Porter was sleeping and Cash was watching a movie, so I told her they were fine. They are still being really good and they have been here for 4 hours!

Many of you know that Kaidan was always our "wild child". Well, that hasn't changed at all. She is still as fiesty and spunky as ever. I often have a really hard time with her because she can be so sassy. We butt heads a lot, but when we are at the hospital or when Kaid is really sick, it's a totally different story...usually. We do have our little arguments sometimes, but she becomes the biggest sweetheart ever. Kaidan has always been a tease, but she also has the BIGGEST heart and when she hurts someones feelings or sees someone sad, it breaks her heart. She is really an AMAZING little girl. But on to the story...about 4:00 this morning she needed to use the bathroom so she woke me up. The whole time we were in there she was telling me how sorry she was for waking me up, I felt so bad that she was so worried about it. I kept telling her that it was not a big deal at all, but she felt bad anyway. I just thought it was so nice that she had such worry for me when she's the one in the hospital. Then, when we climbed back into bed she told me she loves me. She tells me that all the time, but this time was different. It had such meaning behind it. A lot of times we say those words without much feeling behind them, it is more of a habit, but I could just tell how genuine she was being. It felt great to have that small moment with her. Then, to my surprise, this morning she asked me if I was hungry and wanted to go downstairs to get some breakfast. This was unusual because she does not like to be left alone in her room. It just shows me how brave she is trying to be. I'm very proud of her.

The last thing I wanted to write about is from another carepage that I read. This mom had been told that her child had only a 25% chance that he wouldn't relapse, 75% that he would. She used the weather as a metaphor. How would you prepare for a day outside if the weatherman said there was a 75% chance of a huge storm? What would you wear knowing that there is a 25% chance it will be completely sunny and the most beautiful day ever? It's just something to think about. It's hard to understand what we worry about on a daily basis unless you are going through the same thing. Of course, we are blessed that our odds are much better than that. We were given 60-70% success rates. Based on Kaidan's high white count at diagnosis and the fact that it was T-cell leukemia, she was put into the high-risk category. So, when you think about that, it makes you look at things a little differently. Right now, it's a beautiful, sunny day. I'm wondering how to dress because the weather man says there is 30-40% chance that the biggest storm we've ever seen is going to come through. But, like I said, right now is beautiful and there is 60-70% chance it will stay that way. What would you do...I think I'll at least take a jacket and an umbrella.


Semi-Organized Mom said...

What can we do to help?

Is she allowed visitors? We would like to encourage her and you guys!!!

Praying for Kaidan!!!

Semi-Organized Mom said... case you don't recognize the's me..Lorri, from Crawford Irish Dance.