Thursday, October 3, 2013

Another MRI

Clay had his 26th MRI last week. We know, or at least recognize, all of the anesthesiologists and the recovery nurses at this point. We get the first appointment of the day so Clay doesn't have to fast for too long. And this has become part of our lives.  But our frequent-flyer status doesn't really make it less stressful, and waiting for the results makes for a few tense days. So we were very happy to hear our second-favorite 6 letter word on Tuesday: S-T-A-B-L-E.  (Our favorite, if you didn't guess, is S-H-R-I-N-K).  So we start year 2 of this trial with another month of pills. 

The clinical trial Clay is on is having a positive impact on the 5 other children as well, and they have opened up the trial to 6 more children (an informal "phase 2"). As the trial goes on, however, they are discovering some more serious side effects than getting blonder hair. One is muscle break down/general weakness, and the other is heart irregularities.  So they will start monitoring all of the children more closely for these side-effects, and we will hope that Clay continues doing as well as he has been.  The next MRI is in December, and we are going to try this one without sedation.  It will be two hours in the "tube" for Clay, but at this point he seems up for giving it a try.  That should cut a few hours off the experience, spare him the side effects of sedation, and require no fasting.

I should be prepared for the tough conversations that usually come when we are driving, but somehow they still catch me off guard.
"Is my tumor gone, Mom?" Clay asked me from the back seat.
I told him a version of what the doctor had just told me: "No, not gone. It might never be gone, but as long as it is dead we don't care."
"What about my eyes Mom, are they going to get better?" he followed up.
"The doctors don't know Clay. It could happen, but they just don't know."
Long pause.
"I'm going to have to live with someone then, my whole life." he said, kind of quietly.
"I don't know Clay, you can live alone if you want to." I started, gathering my thoughts. "Anyway, most people live with other people. After college I lived with friends, and then I got married and lived with Daddy. So, lots of people never live alone. But if you want to you can...your friend Pat Leahy lives alone."
"No, he doesn't Mom. He has a dog." Clay corrected me.
"Oh, that's right. Well, you can get a dog." I said.
"Really! A dog? Yes!" Fist pump in the air in the backseat.

1 comment:

  1. Fist pump in the air from the Jacksons! and,
    Love to you all ~