hope. full.

Here we are again. Staring at the unknown, waiting  for the longest 2 days of our lives to get here.  Everything is about to change.  No matter what the results are, Nora's doctors will tell us what our family will be doing for Thanksgiving and Christmas. They will tell us if Nora can finally have a bath. They will tell us if she can finally start catching up on all of the vaccinations she has missed since February. They will tell us that maybe when she wakes up on Christmas morning, there won't be an imprint of her broviac across her belly from sleeping on her stomach all night. We are hopeful that her doctors will tell us that her scans and biopsies are clear. NED! We are so hopeful...

I wish that I could say that I was ready for anything the last time we were here. If I would have said that, it would have been a lie. I thought I was ready to hear the news, good or bad. But when Dr. Friehling paused mid sentence, I already knew. And I wasn't ready to hear that her fight would continue. I wasn't ready to hear that Halloween would happen only after 2 more rounds of chemotherapy.  I wasn't ready to hear that the hair she worked  SO hard to grow would thin out again around her temples. I simply wasn't ready, no matter how much I thought I was...

  

It is now Friday, but I wrote those above thoughts on Tuesday. I started to write more, but I just can't seem to find the right words anymore to express the complicated emotions this brings out. How do you describe an immense gratitude for life and motherhood mixed with a steady fear of the present and future?  Add in a spoonful of shear exhaustion and a pinch of grief. I don't know about any of my other 'cancer moms' out there, but I find myself grieving the life I always thought my daughter deserved. I grieve that the summer passed without splashing in the water and playing outside in the sunshine as much as we should have been able to. I grieve all the times that I wish Heidi could have played a little more rough with Nora and splashed in a bath full of toys and bubbles. 

Haven't eaten since 8pm last night. Let's do this.

I want to make it known that I do realize that Nora's situation could certainly be much worse, and not a single day goes by that I don't thank the good Lord for that, but I do still mourn for the first year of life that Nora had, because Heidi's was just so different. For all of us.

I have tremendous faith in both my Lord and Savior, Jesus Christ and in the oncology department at Children's Hospital of Pittsburgh. I know with certainty that Nora has gotten the best care possible on this earth and from the heavens. I will have an outstanding debt of gratitude for that and for those doctors for the rest of my life.

That being said...

Dr. Friehling called today. Nora's scans are considered to be 100% CLEAR. Her CT (chest & abdomen) was normal. No big surprise there, as her CT scan in September was also considered normal. But still, great news none-the-less.

Her MIBG scan showed slight irregularity on the liver. It was stable from the last scan in September, so in those cases, they look to the CT scan to make a determination. She agreed with the reading that the MIBG looked completely normal to her. MIBG scans are graded on a scale of 0-6, with the higher the number meaning more neuroblastoma detected. Nora's score was a 0. That's right. I said A ZERO!!!

Their personalities to a T most days...

Lots to celebrate this weekend, but we are not out of the woods yet. The bone marrow biopsy will not be back until probably Tuesday. Monday at the earliest. We are all so hopeful that Nora's body has seen it's last chemo treatment. We are hopeful for 4 slides of healthy, beautiful, cancer-free bone marrow. I am trying really hard to stay grounded, and not let my hopes get away from me, but if that is the case and our girl is finally done, her broviac would come out as soon as possible, but with the Thanksgiving holiday, it would likely be the following week.

If there is still some cleaning to do in her bone marrow, we will listen to Dr. Friehling's recommendation and continue to fight this fight with the same hope and faith that we have for the past 9 months. Our Nora is a fighter. She makes it look indescribably easy and continues to bring the utmost joy to our lives, in spite of the challenges she has faced. I am forever grateful and honored to be her momma. She has taught me more about life and faith and strength in her short time so far on this earth than I could have hoped to learn from any 10 adults. She is an inspiration to me. As I pray for my girls each night, I am reminded that I have been given the greatest gift, even if it isn't always in the package that I thought I wanted. Every day of this life is a new opportunity to make a difference and find the beauty that is all around. Some days, that beauty is easier to find than others, but trust me when I say, it is there. If you aren't sure, just look at these 2 girls for all the proof you need:

I know I type it a lot, but I really can't express in words our gratitude for the love, support and prayers that have come our way during this journey. So often, humanity is questioned and the world seems so broken and truly lost. My experience through the last 9 months has been very different. I have seen much grace, love, and understanding...things that make me proud of the human race and our capabilities. Thank you. From the depths of our hearts and souls, thank you for praying with us and reaching out to support us in Nora's fight. We wouldn't be so strong without you.