Wednesday, July 28, 2010

Good news/bad news

We have a good news/bad news situation. I will definitely start with the good news....we got two of the three liver levels back today. And they were normal or "almost normal" considering normal to a leukemia kid is never the true normal. For my reference here, the bilirubin was 1.3 (normal is .2-1.0) and the AST was 43 (down from 173) The number I am waiting to hear is the ALT which was super high (468 and is supposed to be less than 45). The nurse I spoke to was thinking since the other liver levels went down, this one should too but I will find out for certain in the morning. In many ways, I feel like we dodged a major bullet. I was not wanting to do a liver biopsy, which was our next step. So I am keeping my fingers crossed that number does in fact trend down.

The bad news is that Jerad and I noticed Ally was feeling bad the last couple of days..not wanting to do anything and barely able to expend any energy. Today, my neighbor got the bonzai slide out and all the neighbor kids were slipping and sliding and playing in the water. Ally went out for five minutes and then sat inside. She was actually crying at this point of head pain. UGH. I try to not get upset and I knew her counts could be going low. It still SUCKS to the millionth degree to see a bunch of kids laughing and having fun and knowing my child is not able. Even after all this time, it can just stab me in the heart when I think of all the things she has missed/will miss, etc. So she sat inside and did some drawing and made another potholder and all the memories of last summer came flooding back to me. I get so mad sometimes I wanted to throw the potholder right out the window, amongst other things. We started out our summer very well, but I have to say that the whole last month has not gone as planned and has been filled with worry and misery for Jerad and I. It is flat wearing me out.

So onto the reason for the fatigue: when I got her counts today, her ANC ( the number we live by as to where/what we can do) was 210. Super low. Hasn't been that low since maybe February? What this means is she cannot fight off anything that may pass by her. She almost always gets a fever with low counts and if she does she becomes inpatient. It is about 1000 points lower than where they would like it. Dr B held her daily chemo...until it rebounds back up. Which it will, it should, but it will take some time. Basically, the doses of daily chemo that she has been getting are too much....and this is why they told us not to go anywhere etc, and to give them some time to get it worked out. They will lower the amount she gets when they start her back up.

Sadly, this weekend was Jerad's high school reunion (20!) and he has friends coming into town. We were supposed to head to his hometown (2 hours aways) and had even arranged some adult time with us hanging out with his friends. There is also giant benefit concert on Saturday night, with all the proceeds going to LLS for Ally's Army. And it is my sister in laws baby shower. Big Weekend. Lots of plans. And, of course, all the plans are getting screwed up at the last minute. Jerad will go and see everybody and I will sit home with the kids and pray we don't go inpatient. And I will get mad. Not at anyone, but just at the situation. I get tired of everything always being taken from me....always ripped away at the last minute. I could read back through this blog and find countless other times this has happened. I am hoping to get to that concert on Saturday night anyway....but it won't be without tremendous worry weighing me down.

Although I am mad and just spent the majority of my blog post ranting, I do have to say that I was so happy about the liver numbers. It is all good......this disease can beat us down, and make me mad, and take things away from me....but as long as we are beating it, that's what matters. And yes I can complain, because I get sick of always thinking it could be could always be better too. And it will. Someday.


  1. Janel I am so sorry to hear all this. I can't imagine what you guys must be going through. It's ok to get angry and vent here sometimes. You have to. You cannot hold it all in. I will be praying for God to take your anxiety and worry away, and for those numbers to rise. I hope that you can find a way to come this weekend. I was looking forward to meeting you Saturday. And I'm sure you could use a night to just relax for a little while.

  2. You're right, it could be better. You've spent a year thinking of all the ways it could be worse, while every turn seems to go the wrong way. So... I'm glad you're venting, you need to get those feelings out. Now on my bright side, there's still a couple of days left, so hopefully things will still shake out for the best this weekend. I love you, still praying for you and Ally. Take care, and make sure Jerad doesn't pack the coconuts!

  3. Keeping you in our thoughts, and hoping that Ally is feeling better soon and that you will be able to make it to the reunion and concert this weekend. You definitely need to get out your frustration every now and then. We all like to be positive, but sometimes you have to release all the negative in order to maintain a good outlook. We are going to help you and lots of others kick cancer's ASS- we are in it with you for the long haul! Go Army!!! ;)

  4. Hi Janel - Finally able to check in to see how Ally is doing. Sorry to hear about rough times. I am so right there with you - have wanted to throw so many things this week and scream out asking, "Why does my child need to suffer so much??!!" It's so unfair for these kids, and especially hard in the beautiful weather - so many more reminders of what little children their age should be doing. I'll be praying that Ally bounces back soon, and thank you again for your prayers for Tori. xo