...and we wait.

I haven't felt like myself for 7 months. 220 days have passed since Nora was diagnosed, but none have felt as long and torturous as the past 5. The minutes creep by as I stare at my phone, waiting for the phone call from a complete stranger that will determine where we go from here. My heart hasn't really left my gut since February, but literally feeling it sink deeper and deeper is more unpleasant than I could have imagined.

  

I got a call on Monday that her MIBG and CT scans were both read. Dr Friehling said that both looked great overall. She said that there were no lights on her original tumor site and none detected in her abdomen. Her liver, however, still showed some activity. It is difficult to say that is definitively neuroblastoma or just physiological activity (rapid cell movement from the liver functioning normally). The CT scan does pick up vague bone activity and from the initial reading, there were no metastasized spots detected. So, we are not out of the woods. As Jen, our favorite nurse and friend said, "She is walking around the edge of the woods."

Nora's biopsy bandages

I guess I should be jumping up and down. Don't get me wrong, I am relieved in many ways, but it is so hard to celebrate with this very big uncertainty hanging over our heads. Bone marrow. It had to spread to her bone marrow. I hate myself for not figuring this out before it could get there. I have been literally terrified since February 26th, when Dr. Shaw delivered that news. I remember looking at him through deliriously tired eyes and tasting vomit as he said those words. 220 nights of restless sleep. I am so afraid. I keep pushing myself to see the good and to stay positive. I know there is good. There is always something good. But why does there always have to be something else too? It's not even always something bad, it's just something. Something taking away from the small joys of our everyday life. Everytime I look at my girls, there is just a hint of haze. Things just aren't as bright as they should be. Life is just a little less fun, and a little more real. I guess no matter how "used to" this new life you get, it is never OK.

LOVING the zoo aquarium

Big Sissy

So, we wait. In between school and dance and an occasional trip to the zoo or the grocery store, we wait. We pray. Every night with Heidi, in the shower, at my desk at work, in the car, watching Big Bang reruns, folding laundry... I pray constantly. I look at Nora and wonder how all of these things could ever have been wrong with her. I try to tell myself that she beat this. She is a BEAST. Cancer is so sorry that it ever chose her. Now, I just need to hear it out loud. I need confirmation. I need that phone call.

Just waiting for the anesthesia team...

You sure are, kiddo.

Even through all of this, she radiates a sense of calming and reassures me that she is happy and loving life. I need as many doses of that smile as I can get.

Please pray with us that Nora's bone marrow biopsy will be negative. Please pray that she is past the harsh treatments and procedures and we can try to pick up the pieces of this mess and figure out what normal is again. I am so afraid, but I know no matter what, she has got this.