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Unspeakable


7-16-2008

Jaymun's fevers are gone (for two days now), and yesterdays CSF nucleated cell count was 2.

But that good news was overshadowed by other things. His marrow remains markedly aplastic (nothing there). And he is increasingly tired and miserable. We get these small moments during the day when he smiles and acts somewhat energetic. We're happy if he crawls around on his bed a little. He won't eat - we found out why when he started vomiting blood yesterday morning.

Acid reflux. So he started getting ranitidine and pantoprazole (xantech and protonix). But this morning he was nauseous again - more bloody vomit that yesterday. So we are adjusting the dose.

I can tell you that the dreadful uncertainty is almost unbearable, as it combines with the waves of stress washing in. Just when you learn to brace yourself for the crashes, then you look around and notice that the beach has been steadily eroding underfoot. You wonder how long there is going to be ground left to stand on.

And my poor, brave, little man - it breaks my heart wondering what he must think about all this. Does he think that pain is all there is to life? That all the days will be torture? Does he even like to wake up any more in the morning? Is he forgetting the fun things?

He should be home, waking up, expecting an exhiliarating day with his family. Getting loved, chased, tickled, digging holes in the sandbox, getting filthy muddy, picking dandylions for mommy, getting tossed in the air by Dad, eating gummy bears, playing hide and seek, messing up his sister's necklace beads, going to the library, wading in the water park, sliding down the slides, etc.

Instead he wakes up with a weak cry, can barely sit up, his head falling onto my shoulder - he moans and cries. Our choices are to watch him suffer, or mercifully give him a dose of morphine and watch his pupils narrow to a pinprick as he falls asleep in a daze on his pillow.

I know acid reflux is the least of our problems. But in the back of my mind, it is the stark reminder that unless we beat the overwhelming odds, dying from myleloid leukemia will be a road uglier than this.

I'm sorry for the downer today, I'm feeling pretty beat up. And that is nothing compared to what Jennifer is feeling.
I see the edges of her horror, I doubt she has the words to portray it.

I don't know how to ask.

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