Thursday, July 25, 2013


Having a child with a chronic, incurable, progressive disease is like having a child who has a monster stalking them everywhere they go. You know it will never leave, in fact you know with certainty that it will one day strike. Even now it lashes out on occasion and sinks its claws into your child. As she cries, all you can do is take her back to the doctor, who will measure the wounds and try his best to treat them, but everyone is powerless to stop the monster. One day he will pounce, and when he does, it will take every ounce of strength in you and your child to fight him. She may succeed in holding him off another 10 or 20 years, or she may not. But for now, the doctors say, he appears to be calm. For now, they say, "just relax and enjoy her."

Just relax and enjoy her, and try not to think about the monster.

Until it looks like he is about to fight. Then rally your strength, gather your support, bring to mind what you have learned, and let the adrenaline wash over you...this is it.


Yesterday I took Naomi for her next blood test since we first learned her kidneys had taken a decisive turn for the worst in late May. I had been reading up on the dietary changes we would need to be making soon: low sodium, low potassium, low phosphorus and so on. We seem to have something in our family genetics that predisposes our kids to dangerously high potassium levels since both Naomi and Toby had been hospitalized as infants for several days with that condition. So I was concerned that we'd hear Naomi would need medication to keep that level low. I had decided it was time to transfer Naomi's care completely to the children's hospital.  I was prepared for the worst.

When the nurse woke me with a phone call this morning I feared the worst. But, contrary to all reasonable expectation: all was well. Naomi's creatinine level, the marker of kidney function that had suddenly and dramatically risen in May and which the kidney doctor fully expected to continue rising had (miraculously?) come back down to the same level it was at last year to 0.92. Her phosphorus level was a tad on the high side, but the other electrolytes were all properly in line. Her tiny, atrophied kidneys are still chugging along, upheld I am sure by the finger of God.

I don't know what this means. I don't know which reading was the fluke. In the last year her creatinine readings have risen and dropped, then risen even higher and dropped again. This is not supposed to be the way the numbers behave. According to every doctor I've ever spoken with, the kidney decline is supposed to be gradual and predictable, not bouncing all over the place. We know for sure from her last ultrasound that the kidneys have atrophied considerably, and it is quite surprising how well they are functioning right now, given how they appear. How long they will keep going at this point is truly anyone's guess.

This is all great news, for now. But what makes it so hard to process is the "for now" part. It's difficult to know how far to let my guard down. But we are thankful to let it down, even a little bit.


Then just as you are sure he is about to pounce, he slinks back to the shadows. It appears as if the monster is being held at bay, for now. You try your best to calm you nerves once more, to relegate the monster in your child's shadow to the shadows of your own mind. For now he is calm. For now she is "healthy." Just keep your eye on him. Just relax and enjoy her...until the next time he flinches.

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