Chad came off the second steroid taper on Tuesday. He was feeling decent, and was not complaining of the severe headache like last time.
He felt well enough to join the girls and I for Carys’ field trip Thursday, and parent night at the elementary school later that evening. (Also, Fiona had her much-talked about kittens on Wednesday. More on that & other recent happenings in another post.)
We were silently pleased that we seemed to be off steroids for the time being. We know better than to say such things out loud, you know. As soon as you say them out loud, it comes back to bite you.
And today we got bitten.
Chad’s headache started Thursday evening, and progressively got worse until today.
He was in bed for a good part of yesterday.
Chad & I were sleeping in this morning, as the girls are away with their grandparents. In fact, I was sleeping very soundly, until about 6:30 – when I heard him screaming my name from another room. It took me a few seconds to realize where he was, and a millisecond to realize he needed me because he was having a seizure.
My heart sank.
While I’m thankful that he hasn’t had any seizures since surgery, I was secretly hoping he would had far less – which he is. And I was silently hoping that we were done with seizures. We’re not.
The seizure happened immediately after vomiting – and then more vomiting later in the day.
So, I called the neurologist on call at Wake Forest, and she agreed that the swelling was causing these symptoms.
Back to steroids. And she added a new seizure medication, Carbatrol, to his regimen of Keppra. Keppra has been working well, but he’s pretty close to his max dose, so adding another medication in combination with it is our next option.
Thankfully, Chad already has an MRI scheduled for Monday afternoon. And we already have an appointment with Dr. Tatter this week. We’ll figure out where to go from here.
We also have an appointment with the radiation oncologist on May 5th, so things are moving along.
It’s apparent that things never go as smoothly as we’d like, but that’s okay.
I like to think we’re experiencing a few more speed bumps in our race to survivorship – but we’re still getting there.