Another day in Winston

Today has been so very long and exhausting.
We drug poor Cailyn along with us, because we honestly thought it would be a quick trip to see Dr. T, Chad’s neurosurgeon.
Turned out not to be so true.
I guess I’ve learned, finally, that I should always pack a ton of activities, fully charge my cell phone, and make sure to have lots of snacks when dealing with kiddos in hospital clinic waiting rooms.
I always say that I’ve learned my lesson — and yet, I always seem to forget it!

We left at 6:30 this morning for Chad’s 9am appointment.
We got there right on time, and were feeling pretty good that we would be nearly home by lunch time.
Then, entered Dr. T.
He asked Chad a few questions, I elaborated on a few answers…and we were sent over to the radiology department of the cancer center for a CT scan and chest x-ray. Dr. T didn’t share much with us at the time, but sad he suspected “some good news and bad news” with the test results.
Yikes. What does that mean?!?

We waited.
And waited.
Chad got his tests.
And we waited some more.
We were starving at this point – 1:00.
I didn’t see the end on sight, so I had to call Chad’s mom to help me with Carys. It was the first day back to school after all — and I needed someone to get her off the bus. There was no way we would make the two-hour trip in time for the bus stop. (And we also had to ask our best friends to get Carys on the bus this morning — which also involved her first sleepover with non-relatives. She had a blast…but anyway….)

Dr. T calls us back, only to share that the scans don’t show any reason for Chad to be having pain. He readjusted Chad’s shunts -both of them- to the lowest setting possible to allow maximum flow of spinal fluid. The new shunt appears to be working…..that’s the good news.

Bad news? The headache and intense fatigue are not (probably) ventricle or shunt related.
Not what I wanted to hear. At all.
I hate knowing that we may have put ourselves through all of this drama for no real purpose without the sweet smell of relief on the horizon.

Dr. T says there is a real possibility that this is as good as it gets. So, we focus on treating symptoms.
He agrees that we probably don’t need to be adjusting shunts or worrying with surgeries anymore (unless he and his colleagues come across something next month — more on that in a minute).

We talked briefly about plans for the near future — specifically pain management.
We left with a hefty prescription for something stronger. If that doesn’t work, we have a few more options before we go to the heavy duty drugs, like morphine, on a permanent basis.

In February, we will go back for yet another long day at WFUBMC.
Chad will have an MRI, meet with Dr. T and a hematologist, to discuss the findings. They will be looking for slight changes in the tumor(s) that they may have missed – changes in histology, grade, division rates — blah, blah, blah. They are just trying to piece this mystery together. And I suspect it’s going to take a while.
The hematologist, who we last saw in early 2008, is a specialist in the specific type of chemotherapy that Chad took for so long. It is a very real possibility that the combination of chemotherapy, radiation, and other drugs Chad has taken over the last two years have led us to this little crossroad. We may need to try a different combo of medications for his current symptoms to balance the negative effects of the toxic medications he had to take.

We asked a lot of questions today. Most of which couldn’t be answered quite yet.
But we should have a heck of a lot of answers next month.
At least, we hope and pray that we do.

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