I have mentioned before that I am a list-maker. If I don’t write something down, I am sure to forget it. Since September 4 we have lots of new lists around our house. We track seizures and medications. I have notes on phone conversations with neurologists and neurosurgeons and our insurance company.
I’ll cut to the chase. Our little Monkey (3) has a brain tumor. Thankfully (so very thankfully) it is benign. But it causes seizures, and limits what he can do with his left hand.
Like I said- it started on September 4. (My birthday! I turned 35!) We went to his preschool open house, to meet his teacher and see where he’d be starting school the next day. While we were there, I looked over and Monkey was sort of flapping his arm and grinning a goofy grin, off into space. I tried to get his attention, and he did look at me, but still with that spacey grin. It stopped a few seconds later and he didn’t skip a beat- just kept on playing. I asked my husband if he saw that. “Yes- it looks like he hit his elbow funny or something.” And that seemed right. That’s what it looked like. No big deal.
And then it happened again a few hours later. This time my friend Megan was over. She’s a nurse and was a second set of eyes- so helpful, since I was scared and panicky. She encouraged me to call our pediatrician because it looked “seizure’ish”. We did. Megan helped me describe it to him. My husband came home, and then we all saw another one a little bit later.
Our doctor came to see the Monkey here at our house the next day, to check him out. By then he was having them every few hours. He called it his “wiggly arm” and could tell us when it was coming. Still the flapping arm and spacey grin, and then he would be up and playing within a second of it being over. The seizures were more pronounced, though. He started to sort of lean over and would have lost his balance or fallen if we weren’t there to steady him. It was all on his left side- his arm and up his neck a little. By the time we met with the neurologist a day and a half later, they were coming on about every hour and were unmistakable.
Fast forward: EEG, two MRI’s, three consultations with two neurosurgeons, one neuro-oncologist, and two different hospital systems. Four medication increases. Physical therapy. Notes and lists and gauging the seizures in terms of “mild, moderate, or severe”.
We’ve arrived at the decision to do brain surgery in early December, to have the mass removed. We met with a neurosurgeon who is good at what he does, and said that he would do surgery if it were his child. He does this surgery “a couple times a week”. (I cannot believe that. There is someone out there who does BRAIN SURGERY a COUPLE TIMES a WEEK. Doctors, I know that this stuff is what you go to school for, but the actual implementation of this knowledge on real, live people is just astounding. I can’t believe there are people who do this. Honestly.)
So that’s where we are. I won’t go into many more details here on ye old public blog. Well, maybe later, but not right now. But I put all this out there because I know I have friends who read this and I want them to know. Friends I’ve met in real life, and friends who know me via what I share here. Friends.
Here’s the last bit of my most recent email, updating our community (which has cared for us well):
Several people have said that this verse from Isaiah comes to mind when thinking of us:
I have called you by name.
You are mine.
When you pass through the waters, I will be with you.
And the rivers will not overcome you.
When you walk through the fire, you will not be burned.
As some of you know, this is a significant verse for my family. This is what Dad read to us after our house fire. It happened when I was 5- Chicken’s age. We lost everything, but I was not afraid. I knew we were safe and well cared for. This is my hope for our family during this time as well.
Love from C’ville,
*I didn’t actually call my daughter “Chicken” in the email. I just like to keep the kids’ names private. And I wrote about our fire once, here.*
Prayers and hopes for our family are happily accepted. Thanks, friends.