Heavy Storm Clouds

My head is pounding as I recover from spending all night nodding off in a rock hard chair in the ER, but I know I really need to send an update so here it goes. 

Oh it's been rough. Rough, rough, rough. The "I want to hide in bed under the covers and sleep, hoping that this is all just a bad dream" kind of rough. There are heavy storm clouds threatening overhead. 

The treatment Ian started was denied by insurance. It's too costly for the hospital to cover, so it's now off the table unless the drug company agrees to donate it. We're hoping the hospital will cover the first dose and not send us a bill for a quarter million dollars. Checking the mail these days is scary business. 

Ian came home New Year's Eve and was there with us for about a week. It was bittersweet. We were so glad to have him home, but it was painful knowing he was released full of leukemia with no immune system and no further treatment in sight, surviving on transfusions every other day. His soul is still thriving, but his strength is waning. There is a growing shadow of grief looming and I can't seem to push it away. 

Ian started having a fever last night and has been having abdominal pain for a while now. They are thinking it might be colitis, intestinal inflammation.  He's back in the hospital and isn't allowed to eat or drink anything until further notice. He's gotten too skinny already from my perspective, so this is worrisome. If it clears up in a few days, then it was just colitis caused by prolonged neutropenia. If it doesn't clear up, they will look into a more severe form of colitis caused by the treatment which would require steroids. 

I'm trying to fight against worry, to refuse to be held hostage by the terrorists of anxiety, fear and hopelessness. I'm trying to trust, trying to hope, trying to be present. But to be honest, I'm feeling very weak, very overwhelmed, very sad and alone. I'm just a Dixie cup. I don't have the strength to carry this heavy burden, to weather this miserable storm. I know my anchor holds beyond these flames, that beauty can come from ashes, that fresh new life will eventually spring up after the storms have passed, but right now it all just feels too sad and grey. 

Please pray for us.