Not over yet.

I no sooner hit publish on the last blog post than my phone rang with Children's Hospital spelled across the front.

I didn't hear the news we were hoping for. I didn't hear that the nightmare is over and life can finally start to make some kind of sense again. I heard the words, "it's a mixed bag."

Basically, from Nora's bone marrow aspiration, a pathologist looked at 4 different groups of her cells. 2 separate biopsies and 2 separate aspirates. The difference is solely in the size of the sample. The aspirates are just tiny swipes of marrow on a slide and the biopsies are larger pieces of the extracted marrow. Both biopsies were clear. One aspirate was clear. The other had a cluster of definitive neuroblastoma cells around the edge. Dr. Friehling told me it is rare that the cells were found in the aspirate, not the biopsy, but she also told me that is not better or worse, just unusual.

So, I cried. In a crowded campus hallway, I cried. I wondered how I would find the words to tell Adam and my mom. I wonder how different it is to hear these things from loved ones than from strangers. Is it easier?  Harder? The same agony?

It took me about 18 hours to see things differently. To focus in on the good. Yes, this sucks. It is a blow that hurts and to be honest, I wasn't expecting it. I had a strange feeling inside for weeks, but I kept thinking, "my God, she looks good. It HAS to be gone." But, there's the good. Right in front of my face. She looks and seems to feel like a picture of health. She is beautiful and vibrant and funny and my goodness, is she smart. She is a daredevil and a comedian. She loves Heidi fiercely and she eats like a death row inmate on their last day. She is one inch and one pound shy of the 50% in height and weight for her age. I would say there is MUCH to be thankful for.

So, we cross this bridge. What it means for Nora is 2 more rounds of chemotherapy. 2 drugs back-to-back everyday for 5 days in a row. One is cyclophosphamide (which she has had before in higher dosages) followed by thiotepa . She will have both of these for 5 days straight, then she will get 3 weeks off for injections and to recoup her numbers. Repeat the same drugs/dosages, then another 3 weeks off. Then, another bone marrow biopsy and MIBG scan. The tumor board thinks this is her best chance to get to 100% NED. So, we listen and we prepare to spend Nora's first birthday in 9B. The major silver lining to the new chemotherapy regimen is that she is able to get the chemo in 9B and then go home each day. Any added normalcy for Heidi is always a major plus, so that alone will make these 2 rounds much easier for all of us.

Nora Melita Misencik, on the day my heart began to beat solely for 2 little girls.

I feel about as far away from strong as humanly possible these days, but I do find strength in others- particularly my best friends. I am so grateful and blessed to have them and they have literally become my backbone and my sense of reasoning in what seems to be unreasonable circumstances. I am forever grateful for them always, but particularly the past few days, which have been harder than I would like to admit. God really does work in mysterious ways. I can prove that to be true because how on earth did He bring such remarkably different, beautiful, hilarious, kind and amazing women to walk this earth with me?


We start Monday. Please pray for little to no side effects and a happy girl ready for Shaler's Homecoming parade on Saturday! God is good. He has brought us here and He will see us through to the end. This I am sure.

Just to liven up this post, I am going to post the video to the song that rings in my head every single time we step into Children's Hospital for treatment or an appointment. Not just for my Nora, but for all of the kids I see pushing IV poles and the families hearing life-altering news. No one knows their strength until they have no choice but to be strong.