Tag Archives: brain surgery

My Guilty Secret (and Great Struggle)

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I have written little of seizures lately.

This is because I’ve been trying not to think of them.

Here’s what I’m trying not to think about: We’ve seen no seizures since Tarica came home from the hospital.

Before you break out the party hats, let me tell you this is the worst possible timing.

Back in November, Tarica was seizing three to seven times a day. The seizures swallowed her life and vitality with the same ravenous appetite displayed by the wolves that lived under my bed when I was six. Brain surgery is a drastic measure, but we agreed to move ahead, bolstered by the continual seizing. She could not live like this.

The seizures continued, and with each one, I felt reassured that we were doing the right thing. When the seizures slowed down around the beginning of the year, I began questioning the wisdom of brain surgery, the wisdom of our choice. Mid-January, Tarica had a severe seizure that felt like God’s answer to my questions.

Yes, brain surgery was better than this guarded half-life she lived.

In the weeks prior to her February hospital stay, the seizures quit. My struggle began again.

But she seized at the hospital as if she were on a schedule, and the tests went well, and God was right there in room EP4, and my heart did not fear. Underneath my surface questions, I had such brave, blind faith that Tarica would qualify for brain surgery. We would agree to do the surgery, it would be successful, and we would shut—no, slam!—the door on epilepsy and live seizure-free ever after. I had the story already half-written in my head.

We came home. Tarica was back on her meds, and we waited for the testing results, waited also for the seizures, for something to happen.

Nothing. She has not seized.

And God has never felt so far away.

I told you the doctor called a few weeks ago, and during that conversation I realized Tarica might not ever be healed. I didn’t tell you what she said that opened my eyes to this truth.

She said, “If Tarica isn’t seizing, I don’t recommend you do surgery. Brain surgery is not a preventive measure; it’s a curative measure when seizures cannot be otherwise controlled.”

But if her seizures are under control, shouldn’t I be rejoicing? Isn’t control what we want?

No, no, no. I want her cured. I want her healed. I want her to live without the fear of seizures hanging over her, because while the seizures are controlled right now, they could return at any moment. I want her off medication so she can be my sweet Tari again.

If her seizures can be controlled by medication, why then did God open the doors for Phase One to happen? Why did brain surgery seem like our destination if it wasn’t?

I had hoped and prayed for healing, but it’s worse, I tell you, to live with hope, because disappointment makes the heart sick. That’s not my thought; it’s God’s inspired words in Proverbs 13:12.

There are several possible reasons why she isn’t seizing:

1. She is mysteriously and miraculously healed.

2. The medication is working.

3. God is giving us a reprieve before the seizures return.

4. God is shutting the door on brain surgery.

I didn’t want to tell you about this, because it feels like I began telling a story and suddenly forgot the punchline. It feels like we began a journey and along the way forgot our destination.

Now what?

We have an appointment next month in which we will discuss at length the test results and their official recommendation on what to do. If she still isn’t seizing, I doubt they will recommend surgery. Perhaps God knows this to be a good thing, but to me it feels like a lost opportunity for healing. Perhaps God has something better for us, but it’s hard to see that through my tears.

I want her healed. I don’t know if I ever wanted something as badly as this. If I did, I can’t think of it.

We’ve been praying that God would make our decision clear. Maybe this is His answer.

It’s not the answer I wanted.

Whatever the answer is, I pray it will be the best one for our daughter.

Even if it hurts me.

What It Means to Choose Heaven

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In my last post, I wrote “I choose heaven over healing.”

Later, I thought maybe that statement could be misunderstand. I want to be sure I am clear.

In the phone call, the doctor didn’t give me any new information. She spoke frankly of the risks and likely odds we are facing and gave her opinion on a few things. She took the facts we know now and explained what it means from her perspective. It opened my eyes to reality.

But we have not yet made the decision on brain surgery. That will most likely happen sometime in May, after we receive more specific details on the testing.

It won’t be an easy choice to make, and my last post was an outpouring of my floundering heart. All this time, I’ve been convinced that surely God will heal Tarica. He still might. We may go ahead with surgery, and she may become seizure-free.

But we might feel God’s leading to decline surgery, or surgery may not heal her—and I finally realized this. Yes, it will hurt deeply (hence the shattered-heart line—forgive my drama), but it’s not as tragic as I think it is. God can redeem our pain and turn it into good.

Ultimately, heaven is more important than a seizure-free life. Eternity is more important than time. Our destiny is more important than our children having perfect lives.

This is an unavoidable truth, but it hurts me, because I want the best for my children.

But so does God.

And heaven is the ultimate best.

Heaven is guaranteed healing, but healing doesn’t guarantee heaven.

I’m still praying for healing, but I’m also praying that if healing is not for Tarica, God will help us accept it and even grow from it. I’m praying that no matter the medical outcome, all of our family would find and follow God, although it may mean facing pain now to gain bliss later.

That’s why I choose heaven over healing.

P.S. But if God does heal her, you will have to search the world over to find a more thankful family.

In Search of the Happiest Ending

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I was writing a post titled “Why I Am Not a Food Blogger” when the phone rang.

It was Tarica’s doctor, and we talked about brain surgery.

I hung up, all my laughter gone.

Call me blind, call me naive, call me a towering monument of faith, but for the first time, I realized that our epilepsy story might not have a happy ending.

I’ve shared maybes and what ifs and questions and fears, but always, rock-solid in the back of my mind, I believed everything would come out right in the end. I’ve prayed “Thy will be done,” convinced that His will meant a seizure-free daughter.

But what if she will always have seizures?

I’m sure you thought of this possibility, from a detached distance, with the advantage of having the facts without the emotions. I’ve even said it is a possibility, said she might not ever be seizure-free, but I didn’t feel it as I did this morning, as a blow to my mother-heart.

She may never be healed this side of Glory.

I do not know if I can bear the thought.

* * *

I heard a story recently of a boy whose parents asked God to take their son Home while he was young if he would grow up to defy God when he was older. The boy died in a freak accident sometime after that. All his peers grew up and rejected God. The father professed that he never regretted his prayer.

That story hit me hard. We have three children in heaven by miscarriage, and it’s my greatest prayer that the rest of our family would someday join them. I have prayed, in a more innocent past, wincing slightly, “whatever it takes, God.”

What if it takes seizures?

What if seizures will make the difference between heaven and hell for our daughter? For our other children? For…for me?

After hearing the story of that boy, I had begun to pray, “God, if seizures help my daughter get to heaven, then help us to accept them with grace.”

But I was still convinced that God would heal her. And not just no-seizures-while-on-medication healed. I meant healed healed, as in no more seizures ever and no more medication. Ever. I hate what drugs do to her.

This is not too much to expect from a God who can do anything.

But what if He doesn’t do this?

* * *

Again and again, God has worked good in my life through hardship. Without pain, I am crusty and independent and proud. Pain turns me to God, and God turns pain to good.

What if living with this particular pain will keep us soft toward God and compassionate toward others?

It could. It might. It has.

To those of you who yearn every day for the child(ren) beyond your reach, this might sound unthinkable, but it was easier for me to grieve a miscarriage that it is to imagine my daughter living with epilepsy till death do them part. Miscarriage was only my pain, softened by the knowledge that my child is safe in Jesus’ arms. It hurts more to watch my children suffer than it does to miss them because they are with Jesus.

(And if my words hurt you, I am sorry. I’m not belittling your pain. If you’ve read the book I wrote on miscarriage, you know I know how great and terrible that grief is. Those of you who have emailed me to share your stories are daily in my prayers. I wish I could take away your pain, but I trust that God can also turn it into good.)

I hate the thought that my children need to suffer, but what’s been good for me will surely be good for them. God can do this for my children—turn their pain into good. I know this, but it feels a little like those times when the children pile into the wagon and fly down the lane.

I don’t want to watch. I don’t want to see them get hurt.

What if God knows we will be better off with seizures than without them?

Achieving seizure freedom has always been the happy ending I envisioned for us. But if that freedom would come at the expense of the happiest ending ever, then no, I do not want it.

I choose heaven over healing.

And it shatters my mother-heart.

The Results of Phase One

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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.

Why Brain Surgery?

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“You know what Phase One could lead to, don’t you?” the doctor asked on our last day at the hospital. He was looking at me.

“Phase Two,” I said. “Brain surgery. We wouldn’t have come this far if we wouldn’t be willing to consider it.”

But why are we willing? Brain surgery is…well, brain surgery. Risky, isn’t it? Complicated. Is it the right thing to do? It’s not exactly a well-traveled path.

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We don’t know yet if she qualifies for brain surgery; we are still waiting to hear. In the waiting, it’s easy for me to second-guess our choice to come this far. I beat back my doubt with the facts.

  1. Research reveals that the sooner brain surgery happens after seizure onset (when the patient first starts seizing), the more likely that patient will be seizure-free following the surgery.
  2. Tarica is not yet in school and won’t be for a year and a half. She will have time to heal without pressure to return to her lessons.
  3. Children’s brains recover from trauma more speedily than teenagers and adults. Why wait until she is older, when her brain is less resilient?
  4. The longer seizures are uncontrolled, the harder they will be to eradicate (which is probably why #1 is true). It’s as if the seizures create paths in the brain that become hard-packed with use and difficult to break up.
  5. Her seizures have shown an alarming tendency to worsen in a short period of time. Better to stop them now, if we can.
  6. A simple illness, such as that one back in January, has the potential to become, if not life-threatening, at the very least brain-threatening.
  7. Medications are just bandages, not a cure, and they are hard on her body. She might always need medication, but we hope brain surgery would allow her to be on a minimal dose.
  8. God has not shut any doors. Yet. He may still shut them. The doctors may not find the seizure focus. The seizures could be originating in an inoperable place. But right now, the door stands open, and we are preparing, if necessary, to walk through…

…by His grace.