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Archive: 18 August 2013

Three Steps Forward, Two Steps Back

As we were warned by many and are beginning to learn the very hard way, this is a journey of many setbacks.

The tumor that had grown in Rebecca’s head, forcing itself between all the most critical areas of the brain, was entirely or almost entirely removed.  It’s mostly likely the latter, since entirely removing the tumor would have meant cutting into brain matter that simply cannot be sacrificed.  So it’s very likely that microscopic bits of it still remain.

There was an initial pathology analysis done, but I’m not going to share the results because we’ve been told that the full workup could tell a very different story.  Apparently, some tumors can look like other tumors at first glance, as it were, and the tumor type and grade that they initially identified is really rather frightening.  Regardless, we don’t know for sure what we’re up against, and won’t for a few more days.  We don’t know how much ongoing treatment she will require.  It could be a lot, a long road of courses of chemotherapy and radiation bombardment that will sear cells and sicken her in an attempt to kill the tumor before it kills her.  Or she might need no further treatment at all.  Not really counting on that last one, though.

The problem is that even with the tumor removed and an alternate drainage path already created, Rebecca’s intracranial pressure is not staying down.  Even worse, the drainage line that extends from the back of her skull cannot be set at too high a pressure level, or else cerebral fluid starts to leak around it onto the sheets.  Worst of all, at least from my perspective, her energy and behavior levels aren’t correlating to the pressure levels in the expected way, which is a real mystery.

So tomorrow morning is another MRI, and the day after that will almost certainly mean another round of surgery—either to reopen the drainage channels in place, or to install an artificial channel that will drain fluids from her brain and dump them in another spot in her body.

Apparently that’s a thing.

Thus she faces her third major surgery in four days, and at this point we can’t even feel like we know that that’s the end of them.  For all we know, she might need a fourth surgery, and then a fifth, and on and on.  Not only are we uncertain about the true nature what grew in the center of her brain, we’re uncertain about when she can finally start healing.  Our daughter’s life is in obvious peril, all while we lack even the most basic information about when and how we can help her fight to keep it.  It is a special form of parental hell, one that cannot be fully understood even by those who live it.

And yet, today she was able to whisper a few words at a time to us through the fog of her exhaustion, telling us what she wanted to drink and responding to questions.  She was able to hold and eat a popsicle without any assistance.  She smiled as best she could at Kat’s silly faces and in response to visits from grandparents and friends.  She played blinking and hand-squeezing games with me for a while.  Later, she was able to kick off her covers and endanger her arterial line.  She was, for all her lethargy, recognizably herself.

Three steps forward, two steps back.  It is progress, but progress of a cruelly exhausting kind.

August 2013
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