The hospital finally called, five weeks and one day after Tarica was discharged.
The waiting didn’t bother me, not in the first week or the second week or the third week.
But the fourth and fifth weeks got a little long.
What with all that waiting, the phone call itself felt almost anticlimactic. After I hung up the phone, I looked at the display. In fourteen minutes and fifteen seconds, I had found out what our next step was. It wasn’t quite as satisfying as I had imagined it to be.
For one thing, the news wasn’t as positive as we had hoped.
Brynna, the physician’s assistant, made the call. This was a relief; she has always been patient with my questions and thorough in her explanations.
After she identified herself, Brynna said, “So. Tarica is a likely surgical candidate.” She said it as if there were more to the story, so I waited for her to continue. “Her case is—”
I wish I could remember the exact words Brynna used. It was something like “complicated” or “not typical” or “not straightforward.” Words we were hoping to not hear.
So. Brynna explained what that meant.
Tarica qualifies for surgery, meaning that the approximate origin of her seizures has been located and it is in an operable area, an area not vital to speech, vision, or motor control.
But her seizures appear to be coming from fairly deep in her brain, which makes it hard to get enough information from the electrodes placed on her scalp. Her seizures also travel extremely fast. For these reasons, the doctors are not sure if the seizures are coming from her frontal lobe or her parietal lobe. They are fairly sure the seizures are coming from the right side of her brain, but are not certain.
We had been hoping Tarica has temporal lobe epilepsy, because the odds of being seizure-free can be up to 90% after surgery is done in the temporal lobe. Not so with frontal or parietal lobe epilepsy. Although we do not yet have the exact figures for Tarica’s case, I did some research and came up with discouraging numbers. We may be looking at a 50-60% chance of being seizure-free following surgery. If surgery happens.
Tarica needs one more test, a neuropsychological evaluation. The neuropsych test will measure how well Tarica remembers, reasons, concentrates, and solves problems. It’s rather like an extensive intelligence test, taking about three to four hours.
If she scores high in the evaluation, it will be one more point in favor of surgery. Ongoing seizures eat away at the brain’s ability to function and concentrate, will even damage a brain irreversibly. For a child who is intellectually limited and may never be able to live an independent life, this damage is not as life-changing as it is for a child with nothing but seizures standing between her and a “normal” life. The risk of surgery is lower than the risk of losing her intellect to out-of-control seizures.
(For those of you who love an intellectually limited child, please know that I know such children are no less precious, no less a miracle for their differences. My daughter may be intelligent, but her brain is not “normal,” not as we wish it would be. But then—what is “normal” but a crude label we slap on those we think fit into a standard-sized mold?)
We are not concerned about this test. Barring extreme fatigue or her refusal to cooperate, she will score well.
The neuropsych test will be done in the beginning of May. While we are at Children’s, we will also meet with the head of the department and the neurosurgeon. At those meetings, we will learn more details on the testing results, the specific odds we are facing, and what they recommend we do.
After that, we will have to make a choice.
Yes or no.
If we choose yes, the hospital is holding open a slot in their schedule for Tarica. Sometime in August or September, she would be admitted for Phase Two of brain surgery. Her head would be opened so that a mat of electrodes could be lain directly on her brain over the area the seizures are coming from. If the seizures are coming from deep in her brain, some electrodes may be slid down inside on probes. She would then be temporarily closed up, and we would wait for her to seize. When enough seizures are captured, which would reveal most definitely where the seizure focus is located, she would return to the OR and that section of her brain would be removed.
If this were a book I’d be writing, Tarica would wake up after the operation and smile her beautiful smile and we would go home and she would never, ever, ever seize again and we would never regret our yes.
But this is our life. No, it’s her life, and our decision.
I pray God we make the right one, for our daughter’s sake.