As you read this story, I want you to know it has a happy ending. These photos are all from this summer.
It defies belief that just 18 months ago our family sat in a gray hospital room, quiet except for the steady whir and beeping of machines, keeping vigil over our beautiful Carrie Ann as she lay in a coma.
It was December 2012, and I thought it was going to be my first Christmas in California. Instead, when my sister Dawn called unable to speak the news the doctor had relayed, the kids and I dropped everything and hopped a flight to Oklahoma that day. Six-year-old Carrie Ann - my sister’s youngest of four - was strapped to machines that kept her breathing. We spent a week that way, Dawn and I taking turns sleeping in chairs and ordering all of our holiday gifts from our phones.
A friend brought lunch, others came to pray, and each time I met the visitors in the lobby, I had to blink hard into the sunlight. A childhood friend was a nurse on another floor of the Oklahoma City hospital, and one of my best friends who is a surgeon made the late night drive just to speak to the local doctors and put the information to us plainly. We saw it then and know it now, that even in this very scary time we were personally well taken care of.
Carrie Ann has epilepsy. We didn’t know it for a long time. She had her first recognizable seizure when she was three, but even that wasn’t fully confirmed until her first grand mal seizure the next summer when she was four. But the year she got really sick, in summer she turned six, she had been seizure-free for over two years. Each recurrence was during the hot Oklahoma months, and we know now that heat and fatigue are two of her strong triggers.
After the grand mal, the brain scans and tests showed that on a scale of 1-10, Carrie Ann was a 1, her type of seizures being the least concerning. But in 2012, her absence seizures started happening frequently. If you’re not familiar with it, absence seizures look like someone is just staring into space or blanking out for a few seconds or minutes. We can’t confirm it, but it’s possible Carrie Ann had been having these types of seizures her whole life.
The neurologist prescribed Keppra, a common epilepsy drug, and Dawn was told that some kids have a bad reaction. Fairly quickly it was clear that Carrie Ann fell into that category as her seizures increased and she eventually ended up in the hospital. From there she was moved onto a combination of Zonisamide and Depakote.
Seeking additional opinions, and in trying to get the seizures under control, Dawn took Carrie Ann multiple times to a specialist in Texas. Everyone assured that the types of seizures Carrie Ann was having - and she was having more than one kind - were not fatal. The side effects of the medications, however, made her so clumsy that she was falling to the ground when simply walking. For this, they added another drug called Onfi.
In October and November, Carrie was back to the hospital for the seizures, which were now numbering up to 40 a day. The medications stripped her of her personality and she slept a lot. Her head would jerk and her speech was changing. I wasn’t in Oklahoma that fall, but each phone call from my mom and sister got more and more alarming. Even with the medicine and the doctors and the nearly round-the-clock surveillance, she was getting worse.
In November, Dawn implemented the radical diet that has been known to help in children with seizures. The specialists were resistant toward taking this step at this stage, since not enough tests or blood work or information was available to know if it would help. Desperate, Dawn started Carrie Ann on the Atkins-like diet. It had no effect.
At the end of her rope, my sister emailed the doctor in the middle of one night in December. She took her daughter to the hospital that morning, adamant for answers. Within 48 hours of checking in, Carrie Ann developed viral pneumonia, and with the existing encephalopathy she slipped into a coma requiring life support.
In those few days, my mom, who was scouring medical journals and online articles, read that many of the things going wrong with Carrie Ann can be caused by the drug Depakote, the very thing she was being given to stop the seizures. Interestingly, my sister noted that although Carrie Ann had always been good about taking medicine, when they started the Depakote she suddenly fought taking her meds every day. She would kick violently, and that struggle was an added layer to what my sister was going through. Because the drugs were changing her personality so much, it wasn’t easy to make the connection that perhaps her body knew the Depakote was poisoning her.
My sister and I only left the hospital once each in the five days that Carrie Ann stayed on life support. We were quiet together, mostly. We didn’t cry much. We talked about inconsequential things. We ate almost every meal from the vending machine. I couldn’t believe how strong and peaceful my big sister was during this time. I still can’t.
Once the doctors weened her completely off the Depakote, Carrie Ann started to show signs of life. We found out later that her body had been shutting down, it was evident in her organs and her hair. We caught it all in time. Barely.
The Gorilla arrived in Oklahoma late on the day Carrie Ann woke up. Her body was still battling the pneumonia, and her motor skills and speech hadn’t yet returned. But when her uncle walked into the room - this Pied Piper of a man - she smiled so broadly. Across the hospital bed, Dawn and I caught one another’s eyes and swallowed back grateful tears.
Carrie Ann’s physical recovery is a miracle. On that we all agree. Three weeks after her coma, she was able to play a game. Two months later she could turn a cartwheel. This summer, just a blink of an eye later, she can ski and tube and boogie board and giggle incessantly. You would never know of her health problems if you crossed her path. Her brain activity on scans is comparable to what it was before, though she struggles a tiny bit with her speech and her forehead bears the burn scars of an EEG wrapped too tightly.
Thanks to what my sister deems the miracle drug Amantadine, Carrie Ann has been almost entirely seizure free for a year and a half. I wanted to write this post not only to update readers who prayed for us and have inquired about Carrie Ann’s health, but also to tell this personal epilepsy story. Depakote reactions can go badly, and there’s no good or easy test to find it.
When we were at the beach last week, my dad stood in the waves with Carrie Ann for over an hour while she played and caught the waves. I joked about how long he’d stayed out there with her. But his eyes said it all. We’re so thankful to have a Carrie Ann here to look after.
A personal note from my sister Dawn:
When you're a single mom of four, one who is unspeakably ill, you can't let your emotional hang ups get in the way, but still, I do. I did.
Throughout the fall, a dear friend would come for brief hospital visits, crawl into bed with Carrie Ann to color or play tic tac toe and bring me food. She would call before to ask what I wanted. I would respond "whatever's easy or close by". No, I want to bring you something that you want. "I don't care" I would say. "Truly I don't." It's not burdensome, she would say. It blesses me to be able to help and to get exactly what you're craving or needing right now. My sweet friend knew that I am not great at asking for what I need and for months she gently nudged me to grow in this area. This became hugely important on all fronts because the mom of a sick little one has to be an advocate for her child and she has to trust in herself.
My family has been rock strong for all of us throughout. Mom was back and forth nonstop juggling my other three kids so I could be completely focused on Carrie Ann. She was also doing constant internet research on all the drugs, the diet, etc. Dad spent more time at the hospital than anyone and became adored by all the nurses. That same friend was with me when Carrie Ann took her very worst turn and, as we both sat in shock while my daughter was being intubated, she said, "Dawn, what do you need?" Having begun finally to learn, I immediately knew. I picked up my phone and called my brother. "I need you here. Right. Now." It was already late in the evening. I had no idea he was in Texas on a business trip. He somehow made it to Oklahoma City in under two hours. Laura arrived the next day and never left my side.
Carrie Ann is the strongest person I have ever known. She has always had a unique mental tenacity that is difficult to describe in a little one. She is also very sensitive. For many of her seizures, she was fully conscious. She knew what was going on, could feel her body jerk but be unable to speak until after. It is unimaginable to me. Today she is joyful and creative, knows every word to every song in the Frozen soundtrack and is becoming a gifted gymnast. I am so grateful.