Tuesday, February 12, 2008

4:41 AM 2/12/2008

Didn't sleep much and when I tell you about yesterday you will know why. In short, Sydney's bonescan had a spot. We had a couple issues with the scan and at first we had assumed that it was just because Sydney had moved her hand. It looked like she had 2 wrists on one arm which, obviously, is not a good thing. So, we reshot. Just for safe measure we pushed up her sleeves and removed the cotton ball and band aid from where she received her injection. The good news is that the second wrist disappeared. The bad news was that the spot that was higher up on the arm did not. All of a sudden it became evident that we were not dealing with movement or a spot on her clothes. At the end of the scan I rushed out the door and headed over to the clinic. I busted down the doors and hunted oncologists. (I know it sounds dramatic but I was actually polite.) I found Howrey and convinced him to x-ray the left arm. Furthermore, I had him confirm on the scan that we were talking about the same arm. I never can tell whether I am dealing with an anterior or posterior view. I am mental that way. Regardless, after a short discussion, he made the orders and we rushed upstairs for our x-ray. Following the x-ray we went home and waited.

After we had gone to sleep Dr. Howrey left a message. The x-ray images came back unremarkable. However, the final reading of the bonescan had come in. "There is a small area of focal activity along the mid-shaft of the right radius. In retrospect this activity was slightly evident on recent studies. Based on these findings we find this activity to have questionable significance. Follow up with radiological film may be helpful."

Did you catch that? There are two important things to note. First off, if it is the right arm than we took x-rays of the wrong arm. I truly believe it was the left arm because of a spot that was lighting up on the right arm from where her IV was placed. Regardless, we definitely need some clarity. If it truly is the right arm we need to x-ray the correct arm and, since I spent a sleepless night thinking about and wishing bad karma on neuroblastoma in the wrong arm, I will have to stay up all night tonight thinking about the right arm. That is two sleepless nights for one arm which is completely unacceptable. Hopefully, it will still be enough. The second issue of note is the comment that "in retrospect, this activity was slightly evident in recent studies." I don't know what to say about that other than to say - I don't like that! A fluke on a bonescan is fine (well, it actually sucks, but fine when compared to a persistent spot that seems to be growing in intensity) This throws out my theory that if it truly is the right arm then it was possibly some "nuclear bone juice" that got smudged on her arm during the injection or some one time fluke in her body that the machine picked up. However, the last three bonescan injections have all been in the right arm, perhaps we have something going on that is related to drug distribution in the vein or something else. Crud, I don't know. I hate this damn disease.

So, what does this all mean. Well, first off, we will get to the bottom of which arm we are talking about. Secondly, we will x-ray the correct arm if it has not already been done. Next we will wait for the MIBG and marrows. If nothing is conclusive we can schedule an MRI. Hopefully, this will give us some clarity. So, right now, instructions, everybody needs instructions. Pray for something benign. Pray for a fluke. Pray that this is not NB. In the meantime, we will try and get to the bottom of this.

Well. I had best be off. I am heading to Dallas at 6:15 AM this morning to catch a Grand Rounds presentation on MIBG therapy of all things. It should be finished by about 9:00 AM which is before I plan to hear from an oncologist. I will post any news that I hear or plans that we make.

It is purpose time. Pray hard!

No comments: