Scream ... Take a breath ....

Yesterday morning I wanted to scream. Yesterday afternoon, I felt I could finally take a breath again. It has been a roller-coaster ride, to say the least. We had the NMO test results on Monday and they came back negative. All the markers for MS have been negative, but apparently, about 20-25 percent of the people with MS don't have positive markers. So it's not ruled out. However, the general consensus of the doctors here is STILL to wait. I could not for the life of me understand why we should not do a biopsy now, because the longer we wait, the more that lesion/tumor/mass whatever it is could be growing inside K's brain. I'm not a fan of risky brain surgery, but at the same time I'm not a fan of letting a possibly workable situation turn into an impossible, terminal one.

OK, that's how I felt yesterday morning.

Then we had a conference with the neurosurgeon, the neuro-oncologist and the neurologist about what we are doing going forward. At first the neurosurgeon said he would like to wait up to three months. That didn't give Steve and me warm fuzzies, to say the least. The argument is, the longer you wait, the more information you'll get. But it's a fine line between waiting enough time and waiting too long. Too bad nobody knows exactly where that line is. But the neurosurgeon understood our anxiety level and the neurologist weighed in that 6-8 weeks is probably more feasible. The condition that K will be go in for a neurological exam every week or so in the meantime made us feel a bit more comfortable. We also know what to look for here at home as far as neurological changes. As long as she remains what they call 'asymptomatic,' (mild headaches and dizziness don't really count as symptoms right now) the chances are slim to none that the tumor, if it turns out to be that, is doing anything fast. Also, waiting this time will allow a demyelinating lesion, if that's what it turns out to be, to 'cool down' (shrink slightly or even resolve itself completely). The scan after that time passes could tell them a lot. While we're waiting, we decided to ship another request for a second opinion off to Johns Hopkins and to Dr. Norbert Liebsch, a world-reknowned radiologist and researcher at Mass General (he deals mainly with Chordomas, which K does not have, but he was happy to look at K's scans and pass them around to his team for evaluation).

So, I felt better that afternoon.

Now, we wait, we watch, we pray, and we listen for divine guidance - but we also have decided to put the worry away as best as possible and enjoy our summer. I realize, and I think Steve does, too, that we have been absolutely useless to our children, our home and his work for the past two or so weeks. We're making the conscious decision to take ourselves off the worry train for the next 6-8 weeks. No more Internet searches, no second-guessing, no more second opinions (we have plenty), no more sitting on the couch in a daze wondering about what happens next. The kids deserve better - we deserve better.

I will keep you up to date on K's exams and what happens after we talk to the demyelinating specialist next week. And, of course, I'll let you know if anything changes. Thank you for your continued prayers. We feel the comfort from them every day. I told Steve that even though the Lord has not told us what K has or shown us a well-lit, clear path before us, I feel that the Lord has provided just enough light for each successive step forward. This, I feel, is a great blessing.

Now, let the summer begin!