What a year!
At last check in, Ian was experiencing some issues with breakthrough seizures. It was normal for him to have these about once a year- with him being a kid and still growing, naturally, his seizure medications needed to be adjusted to accommodate this change. But with 2025, we found we were having the hardest time getting the seizures back under control. The med adjustments would work for a bit, and then the seizures would start again. And this window between seizures began to get smaller and smaller. It started out as a couple months, to a couple weeks, then a couple days, until not at all. And then the seizures continued to get progressively worse.
Ian has had many types of seizures over the years. Starring spells, head dropping, and muscle tightening, to name a few. Towards the end of 2025, the seizures suddenly changed to a type we have never seen before. Atonic, also known as drop attack seizures. And yes, it’s exactly what it sounds like. Ian would be walking, talking, doing something completely normal. And then without warning, he would just collapse. Unfortunately, this caused Ian to get hurt twice. Twice he busted his chin, and we had to take him to get stitches. This left Ian to no longer be able to walk anywhere unassisted. To keep him safe, we used a wheelchair to start taking him places, and we had to make sure he was sitting a majority of the time. He was no longer able to get himself up to get his toys, a drink, or use the bathroom. We were so afraid of him getting hurt. And we were so deeply saddened at how quickly the seizures were taking over his life.
After trying different med adjustments and after the sudden onset of these new seizures, Ian’s neurologist decided it was probably best to look at other options, and we were scheduled to meet with Ian’s neurosurgeon. We went into the appointment thinking we were going to talk with him about something called a VNS. This stands for Vagus Nerve Stimulation, and it’s similar to a pacemaker- a device would be implanted under Ian’s skin in his chest, and a thin wire would go up to the neck area to the vagus nerve, and it would send mild electrical impulses to help calm the irregular brain activity that is causing the seizures.
To our surprise, the neurosurgeon said he thought the best route to take would be to remove as much of Ian’s brain tumor as safely possible. Ian’s first neurosurgeon who performed his first biopsy and removed the tumor from his hemorrhage in 2022 had told his Ian’s tumors were inoperable. Ian’s tumors aren’t sitting right on top of brain, ready to be picked. They are intertwined with healthy brain tissue and blood vessels. Up until that point, it was more dangerous to remove the tumors. But now that Ian’s quality of life is being seriously affected, the pros begin to outweigh the cons.
Because Ian has multiple tumors, the neurosurgeon wanted us to do some testing first. It was probably a really good guess to assume that the seizures were coming from the biggest tumor, located in the temporal lobe. But there was a chance it might not be, and you definitely don’t want to perform a major surgery like that to find out it was the wrong tumor. To our disappointment, when scheduling called us to schedule the testing, they told us the earliest they could get us in was August…. it was March at the time. I remember feeling so upset- how the heck were we supposed to get through 5 months living the way we were?
But something we’ve found through this medical journey is that God always provides. And within a week, we got another call saying they were able to move us to the first week of May. Perfect, we thought. We had plenty of time to figure out our plan with this. (Figure out where Gab would be, our pets, work, etc.) But within another week, we got another call from our neurologist himself.
There had been a cancelation that day, and he wanted to know if we could make it down to the hospital within the next day or two.
Mike and I looked at each other. Not ideal to drop everything with nothing really planned, but completely necessary to do. Our boy needed this test. It was the first thing that needed done before deciding on anything else. We said yes, and within a couple hours, we were down at Children’s Hospital for the next unforeseeable future.
The test itself was scheduled for 3-5 days. It all just kind of depended on how fast they could get all the needed information. Within that time, Ian did multiple tests to figure out his seizures, where they were coming from within the brain, and other tests that determined Ian’s overall brain functionality. I don’t think we were prepared for the results. I don’t think our doctors were either.
The EEG showed that Ian was having seizures nearly all day. This was concerning because we were only seeing about 3-4 a day at that point. Our boy was silently suffering. Seizures put a heavy stress on the brain, especially when there’s not much recovery time in between. This could have eventually led to additional health issues for Ian if we had gone much longer this way.
In addition to the seizure activity, our care team discovered something kind of amazing. Ian’s seizures were mostly on the left side of the brain, where his tumors are, and every so often starting to make their way over to the middle and right side. With their other testing, they determined that most of Ian’s functionality had already moved itself from the left side to the right side. This included his speech and physical abilities. If you aren’t familiar with how our brains work, our speech is located on the left side. And the right side controls the left, and the left controls the right. Ian’s brain housing everything to the right side meant that his recovery to a disconnection of the left side would leave him with minimal side effects.
And so came the discussion of the hemispherotomy. This procedure is used to treat drug-resistant epilepsy, which Ian was proving to have. The neurosurgeon goes in and disconnects certain pathways that connect one side of the brain to the other. This helps prevent that seizure activity from reaching the healthy side of the brain. They wanted us to really think about our decision, but what was there to think about? We had been trying for a year to get Ian’s seizures under control. Our sweet boy lost his quality of life. He could no longer walk unassisted, he was tired all the time, he just wasn’t himself. And if we didn’t do anything, chances were that it would just continue to get worse. Somehow, it was the easiest and hardest decision all at the same time.
If you’ve followed along with our story, you know that we don’t regret this decision. Ian is walking, playing, laughing, talking, and singing songs. He has his quality of life back. He will always need a caregiver now, and he most likely will never regain full use of his right hand again, but even so, he is thriving.
We have our boy back.
