Beanie's Blog: May 2017

I rarely consider myself a Mom of a sick kid. Selene is happy and we lead a relatively normal life. But this video popped up in my Make a Wish facebook group today. For the first time in a long time, I cried myself to sleep last night over fear for Selene's health. So this movie hit crazy home. Every single Mom that I know is a warrior. They do everything in their power to take care of their children. They pull strength when they are sure there can't possible be anything left in them. But there's just something about watching your child suffer, about being strong for them when you don't know if you can even fool yourself. Anyway, this gets you right in the feels. I'm thinking of all of those Mom warriors today.

Moms of Sick Kids

Ok, an update on Selene. Ironically, I meant to write a post a few weeks ago that would go something like "AHHH! NO MORE BAD MEDICINE!" I just kept forgetting to blog, or rather every time I had a moment I'd drink tea and binge watch The Killing instead. Anywho. We decided to stop her Imatinib after fully weaning the steroids. It was glorious. For a week she danced around the house singing "I can't believe I don't have to take my bad medicine!" I kept thinking I forgot to give it to her then would realize we had stopped it and a little feeling of relief washing over me.

We left that appointment with the caveat that we'd all be vigilant. Well, within the last week we noticed her slowing down. We noticed her body stiffening when we picked her up. Those slender little arms could no longer easily bend out of her car seat straps. I mentioned it to Dan and my Mom, both agreed they saw it all too. So we messaged her docs just so they'd be aware for our appointment next week. But they wanted to see her immediately. Our giggly Selene who always laughs and squeals for Ellen barely looked up. Another huge indicator that something is wrong. So after checking her out and some labs, we've decided to put her back on the medicine. My biggest fear, and motivator behind the tears (besides the general "I don't want my baby to suffer!"), is that this will become her normal, for the rest of her life. But Dr. Olson still believes it can "burn itself out." She's so frail and has been through so much, we are just going to hope that she needs more time to get strong and for her body to function completely like it should.

For now, I should worry about more serious things, like how she'll get affordable health care when she turns 18 and her magical PA medicaid program is up.