About all of that seizure testing we did…

I woke you up two nights ago, accidentally. I tripped in the darkness coming out of the bathtub and into the door frame. You startled and your body went rigid with seizure, caused by abrupt awake-ness from the dream taunting you into unrest. Your eyes opened unnaturally wide, your right pupil hyper-dilated, encompassing the blue of your iris into blackness. You tried to sit up, to will your body into submission. I called your name, but you did not answer. ‘Where do you go when the fragile wires rub together and light your brain on fire?’, I wonder as I sit my body beside your own, tucking my hip against your waist. You do not blink. Your chest ceases to rise after exhale. “BREATHE”, I say, and the punctuated word startles your brain into activity again. Two minutes go by. Then three. You stiffly spasming. Me reminding you to breathe. “Hot”, you stutter out with a familiar look of bewildered detachment on your face, “hand…hot”. I remind you this has happened many times before, that it will cease soon, that you will be okay. You disappear from me again for a while; and then, you go limp. Your eyes flutter closed. Your body goes limp. Your breathing resumes it’s steady pace. And you sleep.

                                                                             

This has happened hundreds of times in the few short years since Jesse’s diagnosis. It is one of the many reasons we have fought long and hard to gain control of his seizures. It is the reason we put his body and mind through the trauma of hospitalized seizure studies. We needed answers so we could at least make our peace with whatever kind of life we would be living. If there were no options other than endurance, we needed to know.

For a week in August, Jesse laid in a hospital bed, shaved head littered with electrodes glued to his scalp. Medical personnel flooded in and out of his room all hours of the day and night. They took him off of his medication, slowly at first and then quickly. I left the hospital to get supper and coffee for us, and he had a massive tonic clonic seizure (formerly known as a grand mal). We sat together in his hospital bed the next day and watched the video of the seizure. He looks a bit lost. The nurse walks out. His head turns oddly to one side and upward, and then he howls an otherworldly howl. His body contorts. His head bangs onto the padded sides of his hospital bed. The nurse gives him ativan. Then gives him more. When I walked into his room, having sensed in the air that he was in distress (I actually contacted a friend and told her I just knew something was wrong, so sure he was seizing I was), I was unsurprised to find him looking lifeless, lying in his bed. They immediately loaded his body with seizure medications after this, adding two new-old ones into his regimen. He stabilized enough to go home, and we left.

In September, we repeated the process, this time including surgeries to put the electrodes directly into his brain for clearer understanding of his seizure patterns. They weaned him off of all of his medications except for the one they knew they couldn’t move without provoking tonic-clonic seizures. They ran tests, asked questions, made a map out of his brain waves that would tell us the story of Jesse’s seizures and of his functionality. We went home (miraculously) on our third son’s birthday, just as we did the first September after all of this began.

Weeks afterward, we left in the afternoon, drove to the clinic, took our seat in the waiting room, and did what people do there; we waited. After a while, we were brought to a small room to wait some more (patient life, amiright?). The doctor walked in holding a stack of papers. Printouts of Jesse’s results. He walked us through them, describing what we were seeing, pausing to let us ask questions as he went. His seizure activity forms an outline of his tumor. He has two primary spots where the seizures originate, with a third spot that is less significant. All of his seizure activity comes from his healthy brain tissue. All of that healthy tissue is the dwelling place of his functionality. That means we can’t do anything about the seizures surgically as we had hoped. We didn’t expect that to be an option, but seeing it laid out in plain sight…A little hope that Jesse will get to live any days without debilitating seizures died that day.

We were given only one alternative. A device exists that acts as a pacemaker for the brain. It takes time, but some patients see their seizures lessen within a couple of years, some more immediately. It is FDA approved, which is a mercy, but, until a few days ago, it was not FDA approved to have MRIs if it is implanted in your brain. Jesse is MRI-dependent, so until the FDA approval went through, we were optionless. We…were…optionless.

Last week, after having his scans, after staring at the contents of his brain once more, after learning his tumor looks as though it is growing and shifting his midline off to the right again, after being told we have limited options for tumor treatment that will not do more harm than good…we got the call we have been waiting for from our doctors at Baylor. FDA approval has come through. Surgery for implantation of the seizure control device is scheduled for April. I laughed. Not in amusement, but in disbelief. The thing is, the timing is all wonky. The one potential treatment option we have for Jesse’s tumor growth may not be something he can have if he has the device implanted, but if we don’t get the device implanted, his seizures will get increasingly aggressive and debilitating. The more seizures he has, the less he is able to function in any normal way, the less he is able to really live.

So what are we to do? Wait. We wait. On the results of the MRI with contrast Jesse will be having tomorrow. On the results of those scans the following day. On the doctors to talk it through and come up with a plan. On the LORD. The “I AM” of years ago whose Name still has the power to redeem even this, to restore to joy even this despair. We wait on Him who sings His song of peace over brain cancer with such steadiness and strength that waiting feels just exactly like hoping. Just exactly like hoping.

                                                      

**Pray for us if you think of us. Because of Jesse’s allergy to the contrast used for MRIs, tomorrow will be a rough one. He takes a large dose of steroids and antihistamines to prevent a severe reaction, and those two medications in combination with his seizure medications make for a difficult few days for him. We are also facing some significant decisions in the days and weeks ahead regarding Jesse’s medical care and the care of our financial and emotional needs in the ongoing aftermath of all of this. Cancer life is costly in many ways, and we are prayerfully considering what the Lord would have us do as we manage the ins and outs of life alongside it. (We are NOT leaving our church, just for clarity’s sake. These are decisions rooted in the long-term personal well being of our people and those made in preparation for our distant future.) As always, we are grateful for the many who bring our names to King Jesus. You all have affected us, and we will never be the same because of your love.**

13 thoughts on “About all of that seizure testing we did…

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  1. Thank you for telling us how to pray. God’s peace over you constantly as you all walk through all of the journey and make the decisions. You are loved.

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  2. Jesse, Ashley and family;
    You are all in our thoughts and prayers especially as Jesse endures the MRI tomorrow and all that entails. God Bless y’all! Our God is an awesome God!! We love y’all!
    Rob and Robin from Texas

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  3. Praying for y’all. God please guide the doctors in Jesse’s care. Let your family be strong through these hard times. 🙏🙏🙏

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  4. We are praying hard for our Heavenly Father to cover Jesse with HIs Wings. May Jesse feel the comfort and peace from being deep inside God’s Wings.

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  5. You, Jess and your family are in our prayers. Praying for ease of tests, relief from seizures and healing. We love you!

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  6. Thank you for updating us on Jesse. We will continue to pray for you all. Thank you for reminding us that God is in control of everything and to always trust in Him. May peace be with you.

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