Holding the Course

All the second opinions are in, plus two more from the team at Johns Hopkins and Dr. Norbert Liebsch, a world-reknown radiologist at Mass General. All of them say the same thing: Wait and see. After talking to Dr. Liebsch today, I continue to feel a lot more comfortable with the idea of waiting. He has been beyond nice and super helpful, despite the fact that K has something that doesn't fall into his area of interest (Chordomas) and that he's an extremely busy man. This says a lot about how much he cares about curing kids ... from whatever it turns out to be that ails them. We feel blessed to have a great team here at Denver Children's, but it's also nice to have other eyes focused on K's case, as well.

The next MRI scan is scheduled for mid-August, so unless K's symptoms worsen and we have to scan earlier, we won't know anything until then. It's nice to see her playing and being a normal kid, but it's hard to hear her complaining that her head hurts a lot. Her bouts with headache and sometimes dizziness mostly occur in the middle of the night, first thing in the morning or in the afternoon-evening. At least during the bulk of day, she can have a lot of fun without being in pain.

Daily miracles and blessings ... we thank Heavenly Father for them every day!

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!

The Latest Is That We Still Don't Know

Our neurosurgeon here says demyelinating lesion (MS). Our neuro-oncologist says tumor. Philadelphia Children's Hospital is coming in with the same inconclusive conclusion in its second opinion. So now we wait for one final MS marker test (NMO) to come in early this week. We also await the second opinion from Boston Children's. If the NMO is positive, there is a strong case for MS. However, if the NMO is negative, it does not rule out MS completely. The docs at Denver all agree that if the results are negative, we adopt a 'wait and see' approach and re-scan in 4 weeks. "Can you guarantee that if this turns out to be a tumor, it won't grow a lot in 4 weeks?" I asked our neuro-oncologist. "We are pretty sure that this is low-grade if it is a tumor, but no, we can't guarantee that without knowing exactly what it is," she answered.
I wonder sometimes why every health issue my children have has to be 'atypical' and complicated?
Time for more prayers!!