Trying to Nail Jello to a Tree

I've been avoiding writing about Christi's medical situation as the news hasn't been hopeful over the past week. When I told Dr. Maris I was worried he responded, "We're worried too," which only increased my fears. Her pain (neck, throat, head, upper left back) continues and has increased to the point where she's now actually asking for pain meds (which she hates taking so I know it's bothering her). Despite it all, she has a smile on her face and is thrilled about being back in school- nothing makes her happier. She continues to amaze us every day; we truly do not deserve this incredible young woman. I just wish I could give her that normal childhood she deserves. Each day we've been cuddling on the couch and I've found her just curled up in her bed resting sometimes too - not the Christi I know. It appears that taming this beast is a bit like trying to nail jello to a tree, it's just not going to happen.

The trial which Dr. Maris was trying to get her a slot for isn't available. He does have her in a slot for another trial (CEP) yet that, like Fenretnide, is not at all promising and we're not certain if we'd like to go that route or not. Dr. Maris has blessed us with 8 more months which gave Christi a great summer. We'll forever be grateful for all of that! He has been consulting with Dr. Kushner back at MSKCC. They have some treatment options back in NYC for Christi; however, nothing promising and variations of previously attempted (extremely painful) treatments. Regardless, with the increased pain we know she needs to get started on something as soon as possible. Next week can't get her soon enough!

When Shayne and Christi head out next week (I am "in the hole" in terms of sick days so I cannot go.) I'll have her suitcase packed in case it turns out to be a lengthy stay. I'm just sick about what the news will be when her scan results come in early Wednesday morning. My hope and prayer is that treatment options exist and that they are not "sent home". Until then, we'll continue to ask for God's love and strength and we'll continue to live in denial and pretend this isn't really happening. (Easier said than done, and sleeping has been nearly impossible the past week.) Grandpa's arrived in the Buckeye state and he'll be spending the night with us tomorrow; that's great news! Tomorrow we're going to "New Riegel for ribs" (Just had to put that in there for all who know about New Riegel!) We love Grandpa and we'll focus on that!