Sterling did great at his check-up today. This was our first time to have blood work done to check how his body was tolerating the Depakote. His levels came back on the low side so there's plenty of room for us to continue on this medicine and take increased dosages. Because Sterling is still having 1-2 seizures a day Dr. Reddy decided to increase his meds again. One of the things that became more clear to us today is that it could take 6 months to 1 year of trying different medications before they would deem it a medication failure to control the seizures. So there are easily 2-3 more medications we might try in the next several months. Sterling actually had a seizure right before Dr. Reddy came in the room. Roger was able to catch it on his phone so she watched the video and saw him asleep on the chair. We had already deduced from what we've learned about seizures that what Sterling is having is pretty mild, but it was good to hear her today confirm that. And there's no medical evidence at all that seizures of this kind cause permanent brain damage.
Which brings me to my mood tonight. I feel much more relief after talking with Dr. Reddy today. She was able to forecast for us what the next several months might hold. This was big for me because I was starting to really feel the pressure of not knowing what to expect. Will Sterling be able to play soccer or will we be in surgery in April? Is chemotherapy our next step? How many more medications will we try before we call it quits?
In a nutshell, we need time. All the time we can get to see if the tumor will shrink. It would be great if we could find meds that would curb the seizures. I hate them. They're annoying to me because of their constant reminder that there's something in Sterling's brain that shouldn't be. I wish they were gone. But in the grand scheme of his life, the seizures are okay. They don't prevent him from going to school or playing with his friends. If you were in the room and weren't paying attention to him you might not even realize he was having one. So I need to make peace with the seizures. They might be around for the next several weeks and months. But I'll be glad to tolerate them if they buy us time for the tumor to shrink. Any chemo or surgery is going to be much worse on Sterling (possibly permanently) than any amount of seizures. I need to embrace that perspective.
I was feeling all chipper about this and then he had a seizure. I was overcome with feelings of disappointment. The truth is that I don't like to see something weird happening to my child. And I might cringe a little everytime I see one. But it's the least invasive thing happening to Sterling right now, and so I'd like to be more patient about them.
Sterling will have a check-up in February to check his blood levels again. He will have a MRI in March. If the tumor has changed or grown, that will force their hands to deal with it. I'm not sure what that means.
If the tumor is shrinking or stays the same then we will continue on this course of treating the seizures and giving the tumor more time to shrink. We're not sure just how long we'll do that, but Roger and I are guessing at least until next Fall. We should be having a MRI every 3 months. So if it comes to next October and all the MRIs he's had show the tumor isn't changing then the doctors might want to talk about what to do about it. But that won't be anytime soon.
Please continue to pray with us that God will heal Sterling by shrinking the tumor. But we're confident that He will heal him even if it's in a way we don't like. And so we find great comfort and peace in that.
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