My name is Ervina, and one year ago I was the mom who had it all together — packing school lunches at 6 a.m., working full-time, planning birthday parties, remembering every single thing for everybody. The one my husband called “the glue.”
Then the radiation necrosis in my right frontal lobe decided to rewrite who I am.
It’s not AVM anymore — it’s the “gift” radiation left behind. A dead spot in my brain that swells and destroys healthy tissue every day. I forget my kids’ friends’ names mid-sentence. I forget what I did 5 min ago or completely start to talking about something that doesn't make sense and confusion starts. Some days I cry for no reason; other days I feel nothing at all. My husband says my laugh isn’t the same anymore, and he’s right. I’m watching the woman he married disappear in real time, and there’s nothing either of us can do to stop it.
Every two weeks I sit in the cancer center for a four-hour bevacizumab infusion — the only treatment that keeps the necrosis from growing. $18,000 per dose before insurance. We’re already $87,000 in medical debt and climbing.
I can’t drive. I can’t cook dinner without burning it. I forget to pick up my son from school. My son has started setting alarms on my phone because “Mommy forgets now.” My teenager stopped telling me about her day because I won’t remember it tomorrow. My husband comes home from work and starts his second shift: dinner, baths, homework, holding me when the brain fog turns into panic that I’m losing my mind.
I’m 41 years old and I need help wiping down the kitchen counter because the fatigue feels like gravity tripled at times.
The kids deserve their mom back — or at least the bills paid so their dad isn’t destroyed trying to keep me alive.
If you’ve ever seen me chase my kids around the park, laugh too loud at school events, or send those long group texts nobody asked for — that woman is still in here, fighting like hell to come back.
Please help us keep fighting.
Every dollar goes to medical, medications, therapy, and keeping a roof over our heads. Even $10 means one less night my husband lies awake doing math on how to save his wife.
I’m not ready to leave them. Not like this.
Thank you for seeing me — the real me that’s still in here.
