What Can it Be?

What a week. I’m sorry for the vague/abrupt post last week with no follow up, but I’ve just genuinely been too overwhelmed/exhausted to post until now. Cooper is doing so much better, glory to the Lord. We are not exactly sure what his long-term recovery will look like, but we are hopeful and filled with great anticipation for all the Lord will do. And overwhelmed with gratitude at the many miracles He has done already. So let me explain how we got here. Settle in, because it’s a long story.

Saturday, our plan was to drive to Carthage to spend the day with family celebrating Mother’s Day. Cooper woke up with a headache, but we didn’t think it was any big deal. We made the drive and sat outside visiting. All was normal.

When we first arrived in Carthage on 5/8/2021

And at some point, Cooper started feeling worse and went and laid down in the guest room. A little bit later, he threw up. Our thought was, “Oh great. We have brought the stomach bug to the whole family. Aren’t we lovely.” In the interest of not spreading any more germs, we set Cooper up in his isolation station: a comfy patch of grass under a shade tree in the front yard. He already said he felt a little better after having thrown up, and said he wondered if it was food poisoning instead of a bug. He had gone out to eat with friends the night before. I periodically checked on him, making sure he had water, making sure he wasn’t getting sicker. And he said he felt back to 90%. But at some point, everything went South. The next time I went out to check on him, he looked up at me and said, “Where are we? None of this looks familiar.” Cooper has a reputation in our family as the funny guy. He’s been a funny guy at home. The funny guy at work. The funny guy at school. He’s got a great sense of humor, but like most young boys, doesn’t always have the discernment on the proper time and place to be funny. So I automatically assumed he was messing with me. I scolded him for concocting a crazy and not-even-slightly-believe-able story. But Cooper wasn’t playing. He didn’t recognize Gina‘s yard, and assured me that he had no memory of how we got to Carthage. As I pressed for more answers, he didn’t remember going out with friends the night before… For that matter, he didn’t seem to have any memory of the last month. Long term memory was intact. He knew everyone in our family, named all his siblings, knew where he worked and all about his music. But everything in the last month was gone. Not only that, he was asking the same questions over and over, “What day is it?” “Where am I?” “Do I keep falling asleep?” “Have I asked this question before?” By the time we could give the answers, he had already forgotten the questions, and would restart the process all over again. His memory seemed to be re-setting every three minutes or so. I can’t explain how baffling and terrifying it was. Could this be caused by extreme dehydration? Had he had a stroke? What if the memory loss was permanent? Did he have a brain tumor? As you can probably surmise, what we have been through with Sawyer had a great impact on how we processed this sudden crisis. We immediately went straight to the worst case scenarios in our mind. We no longer have the luxury of thinking, “cancer could never happen to us.” Instead, our hearts pounded as our minds raced with thoughts that screamed what we couldn’t allow ourselves to speak out loud, “Is this really happening to us AGAIN?”

Josh and Colton raced Cooper back to the Tyler ER. This is Miracle Number 1. I had wanted Colton to ride with us to Carthage. He had errands to run, and decided to drive himself separately. This was a huge blessing in the long run, because Josh and Colton were able to rush Cooper to Tyler immediately without having to wait and gather everyone else up. The rest of the family knew little of what was going on. All they knew was that Cooper wasn’t feeling great and was staying away so as not to get anyone else sick. They had no idea things had taken a turn and that something serious was going on. No one else had witnessed his frightening behavior. And what could I tell them? I had no explanation. As I had done countless times again and again since Sawyer’s diagnosis, I entered into an eerie stillness and quiet peace from the Lord. There was no freaking out. No tears. No panic. I was instantly a quiet soldier taking care of whatever had to be done so I could get to my son. The kids finished eating their dinner, cleaned up the pool toys, loaded the bus, and I got on the road to drive what felt like 10 million miles to get to my boy. And you better believe I turned my music on. The entire way to Tyler, I had one hand on the wheel and one hand raised to heaven. I praised God for who He was and who He is and for whatever He was going to do through this trial. Trust me, that was NOT ME. I am not that full of faith. I was not OK. But God was in control and He held my shattering heart in His hand. Battle mode. It’s indescribable unless you have been there and experienced it. I got the kids settled at home with Carson Grace, and Colton‘s girlfriend Brooke came to the house and drove me. Another blessing. I didn’t have to walk into that hospital alone. By the time I arrived, Cooper had already had a chest X-ray, urinalysis tox screen, lots of bloodwork drawn, EKG, and a head CT. He still was asking the same questions over and over, and repeating the same few things he could remember: “I work at Chick FilA, I make music, I have a studio at my house.” The exact same short conversation more than 200 times. Thankfully, at this point all tests have come back normal. The doctors were mystified. Cooper was admitted to the hospital and transported to a room around 1 AM. Josh went home to be with the children, and I stayed with Cooper. It was surreal settling into another vinyl recliner next to another hospital bed and IV pump with another of my children. BUT GOD.

Sunday morning brought a visit from the on-call pediatrician who, equally mystified, scheduled an EEG, MRI and spinal tap. We had already ruled out several things: tox screen confirmed there were no substances or drugs in his body, EKG had ruled out anything triggered by the heart arrhythmia we already knew he had, x-rays showed no blood clots in his lungs, CT showed no large masses or tumors. An EEG would look for disruptions in brainwave activity, MRI was looking for strokes, smaller tumors, or bleeds, and spinal tap would show anything abnormal in his spinal fluid. By this time Cooper had been pumped full of fluids and his personality was returning.

Thankful to have a sense of humor returning.

He had finally stopped asking the same repeated loop of questions. But his brain was still very foggy and many holes remained in his memory. After five horrific failed attempts at an unsedated spinal tap, I said “ENOUGH,” and Cooper was finally taken to a procedure room where he received general anesthesia and a successful spinal tap. Mama Bear was NOT PLEASED. Watching my son moan and cry out in pain while grinding his face into a pillow and gripping my hands so tightly I thought they might break was unbearable. BUT GOD.

Next came 2 MRIs which came back normal. Even though the spinal taps were excruciating and infuriating, we are truly thankful, because the spinal fluid was what finally yielded an answer.

The doctor thought it was strange that I took a picture. But as soon as Cooper woke up after the final procedure, he asked me, “what did the fluid look like?” I know my boy.

Abnormal lymphocytes found in the fluid. Of course the word “lymphocytes” sent another shock wave of panic through Josh and I, but the doctor quickly assured us that that did not mean cancer. It meant an infection. A virus from who-knows-where that was able to cross the barrier from the blood into the spinal column and cause brain inflammation, which then resulted in Cooper’s altered mental status and short term memory loss. Viral meningoencephalitis. And the treatment? There is none. The virus simply had to run its course. Thankfully, the fluids had done a good job of flushing it out of his system. And of course most importantly, Mighty God had His hand on Cooper. We still spent one more night in the hospital for observation and awaiting an official confirmation of the diagnosis from the neurologist Monday morning. She did confirm it, and that coupled with Cooper’s remarkable improvement bought him a ticket home Monday afternoon.

We couldn’t believe it. So much happened in such a short time. Such a sudden and terrifying onset of symptoms, and yet less than two full days later he seemed like himself. He was very weak, still somewhat foggy and a little confused, and as you can imagine, 6 spinal taps make for one heck of a backache. Looking back now a week later, we realize we overestimated how well he was doing.

He felt terrible all day Tuesday and landed back in the ER that night with an excruciating spinal headache. But a repeat CT showed that everything looked fine, and we were reassured that spinal headaches are common after one spinal tap, let alone six. Since then, Dr. Mom has strictly enforced rest and scheduled pain meds to stay ahead of the pain. I have given him three words each day to remember and recall to me throughout the day (sunflower/elephant/83), to monitor his ability to retain short-term memories. So far so good. He has slowly improved every day. Friday was supposed to be his last day of school, and he really wanted one last chance to see his friends before summer. He assured me he was up for it. With a pounding heart, I left him at the school that morning. After about two hours, he called me to come get him. But I was so proud that he tried, pleasantly surprised that he lasted that long, and pleased that he wasn’t too proud to call me when he’d had enough.

If you’ve hung in there long enough to get to the end of all this, let me close with a precious story that blessed me beyond measure. Cooper had told me weeks ago that he had ordered me a gift for Mother’s Day, but that he was sorry it would not make it on time, “but trust me, you’re gonna LOVE IT.” When we pulled into the driveway Monday afternoon from the hospital, he went straight to the mailbox and cheered, holding up an envelope. (He remembered!) That evening, after all the children gave me their handmade Mother’s Day cards, he presented me with that envelope. Inside was a decal he had custom designed for my gold coffee mug. “but God”

Thankfulness and joy to the Lord washed over my aching heart as I stared at the sticker. God knew. God knew the terrifying dark valley we would walk through with Cooper. And He never left us. He never left Cooper. He never left my shattered PTSD cancer-fearing heart as I sat in a hospital with my child. What a good, good Father. Hallelujah.

Thank you so much to all who called, texted, visited, brought meals, helped with kids, and lifted us in prayer. You have truly been the hands and feet of Jesus. We are all still a bit shell-shocked and exhausted from all that has happened in just a few short days, but we are amazed how, in the midst of the crisis, Josh and I experienced tender moments of bonding and closeness and even unexpected joy and laughter with Cooper and with Colton, who rose up, devotedly never leaving his brother’s side.

We rejoice in Cooper’s recovery, and we give God all the glory for carrying us through.

Thanks for giving thanks with me.

Oh, and last Friday Coop dropped a new song. Love how passionate he is about his music. Give it a listen. It’s out on all platforms: Apple Music, YouTube, Spotify, SoundCloud. #proudmom https://open.spotify.com/album/2sjGNGO5YL10CNDASgShq4?si=ecqetkZlR42r-t8dpW9v_w

“And He said, “My presence shall go with you, and I will give you rest.”” (Exodus 33:14)

“I would have lost heart, unless I had believed That I would see the goodness of the LORD In the land of the living. Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!” (Psalms 27:13-14)

““The Lord is my strength and my defense; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him. The Lord is a warrior; the Lord is his name.”(Exodus 15:2-3)

4 thoughts on “What Can it Be?

  1. I got a Spotify account, so I could listen to Cooper’s new song now, and others later. It touched my heart, and I am impressed (even though this style of music is SOOO different for me). I am so glad to get all the details, and am trying to forgive the providers that tried far-too-many times to do a spinal tap. A little too much pride there and not enough humility and compassion. I am so grateful for everything that God provided – Colton’s vehicle, Carson Grace’s care and wisdom with her younger siblings, Colton’s steadfast care for Cooper, Brooke picking you up and going with you to the hospital – EVERYTHING!!! I am also relieved that Cooper’s school work is done – because studying would be so difficult and tiring for a brain that needs to rest often. (Yay, Mama Bear! – limits and schedules!) And I know that you and Josh have run an emotional and spiritual marathon over the past week, waking up every PTSD neuron that you have. I pray for healing for ALL of you, and for the Holy Spirit to keep strengthening and giving you and Josh His wisdom and comfort for each minute and hour. I believe that this crazy scary time will bear fruit in Cooper’s heart and head in ways we cannot foresee – fruit that will glorify God and touch others. I love you all so very much.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s