What a crazy few days we've had. Rion had his blood work done last Tuesday and it was OK, down a little but that is to be expected. I didn't blog about it because it was pretty uneventful and I knew I'd be blogging this week about our trip to Duke.
Rion was doing really good until last Thursday when he started having partial seizures after 6 weeks of not having any. He didn't say anything to me about it until Friday when I got home from work because he was hoping they would stop. By then they were happening pretty frequently, every couple of hours. He took a good amount of his as needed seizure medication and was able to sleep soundly until 5 am Saturday morning. He was woken up by a seizure and within 45 minutes he had 3 of them. I couldn't just watch it happen any more so I called our local oncologist (following the instructions from Duke, we call the local doctors first with any problems and then call Duke if they are unable to help us.) The on call doctor was nice but he admitted he isn't a brain specialist and recommended we call our neurologist. Well we don't see them very much so I just skipped that step and called the neuro-oncologist on call at Duke. The good news is we got the seizures to stop, the bad new is that meant increasing his Keppra from 2000 mg/day to 3000 mg/day which is the maximum dosage. He started the higher dosage Saturday morning and only had a few seizures all day, by Sunday they had stopped completely. Unfortunately the side effects from increasing the Keppra are pretty severe. Rion is extremely fatigued, he is taking at least 1 nap a day and then sleeping at least 10 hours a night. The fatigue should subside over time but the mental side effects are what scares me. Rion has always been very positive & optimistic throughout this entire journey but I see his faith wavering now. Whether it be from the increase in Keppra or the seizures themselves, Rion describes the way he feels as "going crazy" or being "unable to collect his thoughts." It is slowly wearing him down and it worries me. While understandably apprehensive about tomorrow I am also so relived we don't have to wait any longer to get some answers about what is going on. Honestly if we hadn't had this trip planned already I would have brought him up here any ways. Something is definitely going on and the sooner we can get some answers the better.
So...the big question is: what happened to start causing these seizures? From my research I have come up with 3 plausible answers. First, and most UNlikely is that the tumor is already coming back. The neuro-oncologist I spoke with Saturday all but ruled that out since the MRI 2 months ago was clear. It is almost impossible for the tumor to come back that quickly & while actively taking chemo. My second theory is scar tissue from surgery has formed around the resectioning cavity. I am not sure what course of treatment would be taken to correct this problem but I couldn't imagine much could be done. My last theory is that Rion's brain has started to swell from the radiation treatment and the swelling is causing inter cranial pressure leading to seizures. As sick as it sounds this is what I hope will be the diagnosis. I am pretty sure they can prescribe steroids to reduce the inflammation and then back his Keppra back down. Of course those are just my thoughts and it could be something totally different. Either way, I just pray its something we can treat rather than just treating the symptoms.
So that brings us up to the present. We are sitting in a hotel room in Durham trying to relax enough to sleep tonight (something I have really been struggling with.) We will be at the hospital at 7:30 to start blood work & then on to MRI at 8:30 and the oncologist appointment at 10:30. Please pray for our nerves and the grace to accept whatever the diagnosis may be. I will try to update the blog as soon as I can. If you are on Facebook, feel free to send me a friend request as I often mention things on there before I have time to blog.
God bless!!!
Emily
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