The Results of Phase One

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.

Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762.

Blausen.com staff. “Blausen gallery 2014”. Wikiversity Journal of Medicine.

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.

10 thoughts on “The Results of Phase One

  1. May God give you wisdom as only He can! So far, the answer doesn’t seem very clear, does it? Hopefully the next step will help clarify things for you.

  2. Either way you decide will be life-changing. What an immense, weighty decision!! Humanly impossible. But “with God all things are possible.” Your only recourse is to throw yourself on God and walk through the doors He opens. Total surrender. So painful. Love and prayers for you all!

  3. After a traumatic brain injury I was given a neuro-psych test, it was not at all stressful. They just ask mostly things you would know at your age level. It gives them some idea of where you are at intellectually. Since my brain was damaged it showed that at one time I knew the whole answer but now only part of them. Tarica is not there and the test should be fun for her, they don’t poke or prod and the person facilitating the test will be comfortable with kids. She is God’s child and he will look after all of you and you have an army praying for that. Praying all the time for all of you this is something that impacts all the family and friends.

  4. So glad to hear about the phone call. God bless you with direction and wisdom. It would be great to talk to you in person. Sometimes I wish we knew what questions to ask…. our daughter’s dr. is very qualified but sometimes i wonder if we should ask more questions. But what??

  5. What a relief to finally know!! though I do not envy you this painful decision.

    May you feel upheld by grace (God will use even the mistakes in this story for good), courage (He has placed you here for a reason), authority (you are His child, called into action), and humility (He is the only one whose ways are perfect)! Much love to you and Tarica.

  6. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” Isaiah 30:21 NIV
    This has been a special verse to us when we face a big decision. God always gives direction to His children… Sometimes it doesn’t come till the last minute, but it comes.
    I care! -Andrea

  7. Hi Stephanie-I’m glad to read that the phone call finally came. Look back on all that has happened over the past year. God has led you, your husband and the doctors every step of the way thus far. He will continue to do so. He will not leave you nor forsake you. Continue to lean on him and trust in him. I pray for comfort, strength and wisdom in the days and months ahead.

  8. God give you much wisdom in the next months of not knowing. I had to think of this statement when I read about normal, one person defines it as “Normal is only a setting on the dryer.” We put normal in our own thinking into a box- not at all thinking about what God has planned for us. He is the one in control so why do we think that we can even half way know what normal is? Why do we so often after a tragedy, think we now need to adjust to a new normal? I have heard that statement many times and in thinking over it realize that there should not really be a normal in our lives. With God our lives need to always be ready for the next challenge.

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