Coming to you live from my rickety hospital room side table! The Lunder 8 nurses are 10/10 but the furniture here isn’t our favorite.

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Today was a big day!!! This is a longer update with some scientific ✨ razzle-dazzle ✨.

Shout-out to everyone who sent good vibes out into the universe last night - Caroline had 2 seizures! Crossing our fingers for seizures is starting to feel a lot like Opposite Day in middle school.

The epilepsy team let us know that they officially have enough seizure data 🙌 As I mentioned yesterday, they started Caroline back on her epilepsy medication this morning and hope to capture a “baseline” for comparison. Apparently those “mini seizures” (that Caroline isn’t aware of) are happening incredibly frequently. The doctors want to compare this activity against her baseline to see if the epilepsy medication is stopping/dampening them, or if they persist even with medication.

Ready for a lil science lesson?

The biggest take-away from this morning’s rounds is that the “mini seizures” and full seizures are originating from the same place. This finding is incredibly exciting because it means they’ve localized a specific area of the brain to target during her resection in March. Although there are a couple of routes her surgical team could take, Dr. Richardson is leaning towards a resection (vs. ablation or a neurostimulator) because it ensures that they’re able to remove all of the necessary brain tissue.

As you may or may not know, there are countless ways that seizures can manifest. Most people think of tonic-clonic seizures with convulsions and a loss of consciousness. For anyone who has seen Caroline’s seizures, this isn’t the case at all. In fact, her seizure presentation is part of the reason her epilepsy was misdiagnosed (as laryngospasms) for 20+ years. While Caroline’s seizures do involve a throat sensation + laryngeal constriction, they also include facial movement/sensation, “speech arrest”, altered awareness, and a seizure hand movement called “counting the money”. By the way - it was all of these unusual symptoms that guided Caroline to her own diagnosis.

So this begs the question - if the seizures originate in the insula, why do they look like that? Based on the data from only three seizures, the epilepsy team found that her seizures originate in the left-side insula but actually spread to the frontal lobe (and even parts of the right hemisphere of her brain). Seizure activity in her frontal lobe is what produces those movements in different parts of the body. Overall, her unique seizure presentation is caused by the functional combination of the insula + frontal lobe interacting with each other.

Okay, class is over.

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After 3.5 years of countless virtual visits, we finally met Caroline’s epileptologist in person today! None of us have EVER interacted with a doctor like him before. He has spent hours upon hours with us - explaining his research, answering our questions, reviewing numerous videos of Caroline’s seizures, suggesting other specialists and second opinions, helping us test every epilepsy medicine under the sun - and literally so much more. He officially diagnosed her with epilepsy and agreed that it was likely insular epilepsy. His advocacy is unwavering and he remained steadfast on this from the start - despite having little to no scientific proof (until now) and even disagreement from his own fellows. As he put it today, he “doesn’t like accepting the easy answer for something when there is clearly more to the story”. None of us have ever heard of or personally experienced working with a doctor as invested, brilliant, and humble as he is. We (all) laughed. We (almost) all cried. Dr. McGraw even shed a tear.

Caroline’s family, especially her parents, have watched Caroline go through this battle for over two decades. No one has had a good explanation and many doctors dismissed them. No one was asking the right questions, the hard questions. No one was trying to dig deeper. No one really understood the impact that this was having on Caroline’s life. Aside from the obvious physical implications of seizures, this has controlled Caroline’s psychological and social wellbeing as well. Dr. McGraw never let up and was focused on letting Caroline have a life where she could drive without fear; get a good night’s sleep; run simple errands by herself; present to clients at any time of day; eat at a restaurant without claiming the seat with the easiest “escape route”.

As Mary and Alan put it today, Dr. McGraw changed Caroline’s life. He changed all of our lives.

It’s a good thing I’m writing this from behind a screen because I’m (once again) crying with relief and gratitude for him. I actually remained pretty quiet when he visited Caroline’s room because I was scared a single peep would open the floodgates. Spoiler alert - the tears poured out the second he left the room.

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Let’s lighten the mood, shall we?

Caroline is still managing her pain and restlessness like a champ. It was a big day for Caroline’s appetite! She was like the Very Hungry Caterpillar - yogurt, bone broth, protein shake, chocolate chip cookie, cinnamon bun, quiche. Don’t worry, we’ll address her nutrition when we have more bandwidth.

I didn’t get to do any morning reading today because I somehow managed to sleep in on my fold-out hospital bed. My Oura ring even praised me for getting so much “deep and restorative sleep”. Not sure how I’m doing some of my best work here but I’ll take it!

The research continues and so does Caroline’s willingness/patience. The nurses loved their basket restock of goodies.

We had a few visits - in-person and virtual - with friends and family. Mary & Alan did the daily quiche delivery. Katie brought us gifties from a local shop. Kyle hung out even though Caroline promptly fell asleep upon his arrival. Joey updated us on how the Celtics are doing. Tori told us funny stories. My parents checked in and let us FT with Oakley (he’s not big on small talk). Katherine assured Caroline that she “doesn’t look scary at all”.

Caroline continues to love all of the videos and notes. I’m sharing one from Katrina below because it’s truly incredible. We’ve decided that Caroline’s lesion needs a name so we can evict it properly. Let us know if you have any suggestions!

Caroline is currently sound asleep with Gilmore Girls playing on our room’s tiny TV. Our view of Boston looks really pretty right now. We have a fantastic night nurse.

Today was a good day.

Sending our love from MGH.

Love, Nat