Brinley's bone scan went great today. She was injected with the dye, then we waited around for 2 hours (thank goodness for portable DVD players), went back and did the scan. We weren't sure if we should sedate her or not, so we decided to first try without sedation since she doesn't like "sleepy medicine". She did amazing, she just lay there perfectly still for about 40 minutes. She started to cry at the very end, but still remained still enough to get the second part of the bone scan (3-D of her pelvis). The radiologist immediately looked at the scan, and ordered a chest x-ray because he saw some inflammation in her chest area. We thought it might land her in-patient with pneumonia or something, but turned out to be just fine. He also gave the results right away, that he didn't see anything unusual on the scan. So after a long day, we came home and had hot dogs for dinner :) The laundry fairy had visited (ahem, Aunt Nancy) and we were glad to be home. I am in my PJ's at 7:30 and bedtime cannot come soon enough.

Dr. Druzgal called us soon after to discuss our next step. We are going to start neurontin and see if her pain is a result of neuropathy. There is no way to test for neuropathy, so we just have to try the medicine and test it that way. I am hoping this will work, this is all just too much for her. It takes a few weeks to build up, so we are going to start it right away. Thank you so much for your continued prayers, we are having a hard time and really appreciate them!!!!!

I have not had a moment to update, and there is a lot to update. Clinic on Thursday was full of unanswered questions. I told them how the pain went away for a week, then returned suddenly. With that information, they deduced that it probably was NOT the chemo causing all the problems, so they decided to continue the steroids this month. So they gave her the chemo and we started another pulse of steroids. They consulted with another oncologist, to get a fresh perspective, and he came in and talked with me. He said he immediately thinks disease when listening to her symptoms, but since we already checked her marrow, and it was clear, they are all at a loss. So he felt they should do a bone scan and see if there is anything to see there. They also want to have her put on motrin round the clock, and see what that does for her pain. If it relieves it, it may be some sort of inflammation. For those of you cancer families, you know motrin is a big no-no because of the way it affects platelets and can mask a fever. They, however, felt the benefit outweights the risk since her platelets have been fine for months.

That night, before I could even get a dose in her, she got a fever. We went to the ER and got the usual dose of IV antibiotics, and were lucky enough to get Chris, our favorite ER nurse. He is absolutely wonderful, accessed the port with no problemo, and got us out in about 4 hours. That might just be a record for us...even though it was 2am and Brinley had not slept a wink.

Her ANC had increased quite a bit in just a few hours, so I figure there was something going on inside. She didn't really have any other symptoms, reminding me of her last fever with no real symptoms, but has since had a little cough so maybe it was some bug.

Friday the fever was still there, so we went to clinic for another dose of IV antibiotics and they decided to check her blood again for her CRP (C-reactive protein) levels. It measures inflammation markers in the blood. They checked it a few weeks ago and it had been normal, but our oncologist decided she should check again. Well now the levels were high. What does that mean? It indicates that there is inflammation somewhere, but it doesn't tell where. Your guess is as good as mine, you can find the list of possibles on this page. Could be a number of things.

So we go in tomorrow afternoon for the bone scan and see what we can see. We will probably not have the results until Monday. If there is nothing there, we will go on the the next step. Whatever the next step is. I can only take one step at a time...

The chemo is hitting her hard again, and she pretty darn near refuses to walk. She wants to be carried everywhere and will only walk when she is forced to because we have to take care of someone else. Her feet are bothering her, and tickling, which may have something to do with that, she is even walking on her tiptoes a lot of the time to avoid touching her feet to the ground. That is a tell-tale sign of neuropathy, so I am convinced we should start the medication to help with that and will talk to them after we get the bone scan results. It is really bothering her.

If ever there was a way to test patience this is it. Patience to figure out what is wrong with her, patience with all of the kids who each have needs of their own, patience with a constant flow of tears from a hurting, sick girl, patience with Heavenly Father because I don't understand why. Hopefully by the end of this I will be loaded up with patience. If I can just figure out how to get through without losing it, because this "season of difficulties" has gotten extremely difficult. I am having a tough time staying positive right now. It feels almost like we are back in induction and have shifted into survival mode. Her body is getting hammered right now and it just isn't fair. It just isn't. She asked me the other day "why am I sick for so, so long?" Does she even know what it is like to feel really good any more? Is pretty good her best? When I see her happy and playing, is that because she feels "pretty good"? In three more months, Brinley will have been on chemo more than half her life. It's all she knows....

My prayer request is a difficult one, because I don't know what I even want for tomorrow. Tomorrow afternoon is the bone scan. Do we want the bone scan to show something so we have an explanation, or would it be bad if there was something there? I will be disappointed if there is nothing there to explain her pain, but I don't want there to be something there that will be difficult to treat. So just pray that she will be pain free very soon, that will do. Just pray the pain will be gone from her little body. This is heart wrenching.