Wednesday, September 2, 2009
The word of the day is inconclusive.
The word of the day is inconclusive. I don't like that word. Our day started early and has been pretty hectic. The MRI went off pretty much as planned after some early insurance confusion. Also, for some reason the anesthesiologist didn't realize she had a central line and wanted to give her an IV. Fortunately, Roger intervened!! Once the MRI was done, they headed up to the clinic. I taught my 3 morning classes at Romp n' Roll. It was great to see the kids and my great staff again! I met up with Charlotte and Roger about 1 PM and Dr. Khan came in to greet us a little after 1:15. Overall, he is impressed with her progress. We went over all the vitals (eating, sleeping, pooping, etc.). Talked about the H1N1 stuff. She can get a regular flu shot but cannot get the H1N1 vaccine due to her suppressed immunity so don't be surprised if we are ultra germophobic and hermetic in a few weeks/months. This may be the first year we all get flu shots. We don't normally and none of us ever get the flu. I think she's due for a few other vaccinations as well (that she should have gotten at her 4 year well visit) but they may have to wait.Now to the MRI results: First of all, Dr. Khan was kind of surprised that we had an MRI today, which was kind of weird. We thought HE was the one that scheduled it. I am not positive but I think that this MRI was scheduled a long time ago (before we went to Houston) and was never taken off the books and then it just coincided with our return to Virginia. In any case, he looked at the scan and compared it to the scan from her post-op MRI on May 29th. Unfortunately, they don't have the July 14th MRI from MD Anderson. We thought they did. The problem is that the MRI does show growth from the May 29th scan to today's scan. Dr. Khan needs to know, however, if there was MORE or LESS growth in the July scan. If there was a progression from May to July but there has been less growth (or stabilization) between July and now, that is good. That means that radiation, chemo, something is hopefully working. If there is more growth now than there was in the July scan...well...that's bad. Really bad. Unfortunately, Dr. Khan didn't have much more to tell us today but we did discuss starting her new protocol next week and we are hoping to have some answers from MD Anderson (the July scans) by the end of the week. Roger and I are frustrated and disappointed. This is definitely a case of "no news" NOT being "good news". You all know how much I hate ambiguity in these situations and the fact that there wasn't news of LACK of growth in any way is a pretty bad omen to me. In the meantime, I need to try to focus my energy on something productive as there is MUCH to do. Unpacking, organizing, making PT/OT appointments. Lots to do.Since my post last night, we have realized that our neighbors decorated their mailboxes and porches with pink and purple ribbons and balloons. Our house was decorated as well. The "welcome home" was very touching. We also found some food that had been "mysteriously" left in our refrigerator and I understand more is on its way this afternoon. Thanks! Roger is off to work for the evening and I'm here with the princess. We'll keep you updated as we know more.