Brain surgery is not something one goes into carelessly, particularly when it’s your child at the end of the knife. We have been praying and praying, God, show us what to do. Help us make the best decision for Tarica.
Yesterday, God showed us the way, and it is both a relief and an ache.
Tarica had a seizure in the van right before we left for our appointment in Pittsburgh. I was not there, but Linford told me it was longer and more violent than usual.
At Children’s Hospital of Pittsburgh, we met with the doctor and talked about options. “Your daughter has a less than 5% chance of living seizure-free on medication,” the doctor said. “Once a patient has failed two medications, there is little gained by trying a third, fourth, or fifth.”
Brain surgery, he said, is Tarica’s best hope of living a seizure-free life. Not that it comes with a guarantee. She has somewhere between a 50-90% chance of being seizure-free after surgery. No, not a guarantee, but better than her chances on medication.
He laid out what we could expect if surgery happens, a tsunami of information. I had about reached saturation point when Linford made an odd noise. I turned to see Tarica seizing on his lap, her limbs stiffening and convulsing in turn, her eyes unfocused and fluttering. Linford laid her on the exam table, and the three of us hovered as the seizure went on and on and on.
The doctor mentioned getting Diastat (an emergency drug used to stop a seizure that won’t quit), but just then, her body went limp and she began to cry. Linford gathered her up and soothed her.
“Her seizures are getting longer and harder,” I said to the doctor. “Will they continue to grow worse?”
“Yes, they will,” he said. “Her seizure focus (the place in her brain where the seizures start) will grow, and she may develop a second focus.”
Tarica wanted me to hold her. She curled up on my lap and fell asleep, exhausted by the seizure. I felt nearly as tired as she. I have grown accustomed to seizures since March, but this one—this one scared me. This one was the worst I’ve seen yet, other than her tonic-clonic (grand mal) seizure.
If I questioned the wisdom of surgery, that seizure removed all doubt. Unless something changes, the seizures will eventually swallow up her life, and our bright, sweet daughter will be lost to haywire electrical surges and exhaustion.
We are moving ahead into Phase One of surgery. This phase will determine if she is eligible for surgery. It means a ten-day hospital stay, during which she will undergo a series of tests—EEGs, MRIs, PET scans, SPECT scans, and maybe some others I can’t remember. If these tests reveal the seizure focus, she will be eligible for surgery.
Two-thirds of those who enter Phase One do not qualify for surgery. Nothing is certain yet, and nothing is scheduled either. It will likely be a few months before anything happens. In the meantime, I watch Tarica more closely and reacquaint myself with the emergency drug, just in case.
She has not had one of those violent seizures today. I do not presume to know the mind of God, but perhaps He allowed those seizures to occur yesterday so that we could move ahead without doubt.
If only I could erase the memory of my daughter in the grip of something terrible.