best. day. ever.

So, I feel like most people have heard-either through Nora's facebook page or from a phone call or email, but Nora's slides came back clear. NO EVIDENCE OF DISEASE! We got that phone call that we have been waiting for since February 23rd. And of all days, it came on November 23rd. Exactly 9 months to the day from when this nightmare started, it finally ended.

Silly girl.

I am using the term ended loosely. I am completely overjoyed at this news. I have felt a sense of relief that I wasn't sure I could feel again, but I won't say that this has ended or that it is over. If I do say that, then I am lying. From MY standpoint, this will never truly be over. From the pediatric oncology standpoint, they may consider this over at 18. I am not in any way trying to be negative or look for pity, but the reality is that Nora will be in that MIBG scanner again. She will need constant follow-up blood work and urinalysis. She will need to have more bone marrow biopsies. I don't know all  any of the real details yet, but I do know that I am still scared. I will be scared for a very long time.

Thanksgiving toast to HEALTH

Pretty girls.

So...what do you do when you are scared everyday? You keep living. Some days are easier than others, but you try really hard not to let your worries affect your actions. You try to stop the fear from consuming you, because living like that isn't really living. And you know what? My baby girl didn't fight this terrible fight so that I would keep her on the sidelines or be afraid to live myself.

Thanks, Basil for the bath toys!

When I look at either of my girls, I see absolute beauty. The kind of beauty I see isn't anything people discuss when they talk about looks or features. I see the rawest, most complete beauty this world holds. The kind of beauty only an omnipresent, omniscient, omnipotent being could produce. A literal light shines off of them into my life. And that is nothing I will let fear control.

Recovering from anesthesia is no fun at all.

I am so happy that my girl does not have to wake up on Christmas morning and have a blood draw scheduled. We can stay out late at a Christmas party and not rush home to give her a painful injection. My baby had her broviac taken out last week. If she has a fever, we can give her tylenol, we don't have to throw her in the car and rush her to Children's hospital. Breathing is easier. I wouldn't say we are at 100% lung capacity, but are any parents really ever there? I think my own mom worries about me at 33 and my sister at 35. Trying to look at this for exactly what it is:
the best news we have gotten since February 23, 2016.

Hair Up!

I continue to think about the impact this has had on our lives. Talk about a test of faith! I lost count of the number of times I looked directly at the ceiling/sky this year and asked out loud, "why?" I might have meant- why now, why this, why her...it doesn't matter what I meant. I knew why. Because it is a part of her plan, and therefore a part of our family's plan. I am so grateful that I was raised a faithful servant of the Lord. Because without Him, I'm not sure how I would have made it out of this ordeal in one piece. I don't know what is going to happen in the future, and that is scary. Of course I have heard the statistics. Of course I know the risks. But I also know that my girl is in the hands of her Savior always. And THAT is how I plan to make it through today, tomorrow and every day after.

Our general thoughts about our first bath...

Thank you. I could type it 1,000 times but it would never be enough. During that moment in my life where the punch to my gut was so hard, so deafening, I couldn't find air to breathe, you all lent me yours. The dinners, the cards, the messages, the surprise gifts, the gift cards, the letters, and most of all-the prayers...they kept us going. To use a quote from my new second-favorite show (nothing will ever beat out The Office), "You all took the sourest lemon ever handed to me in this life and turned it into something resembling lemonade." I never thought that would have been possible. 9 months of terrified. 9 months of tears. 9 months of sadness...but we made it. And that is because of our warrior family. This world is so broken. It needs a lot of help. I will never deny that. What I will deny is that humanity is gone. I will deny that goodness doesn't exist. I didn't mean to look for it, but it happened to me. I hope you never find yourself in these shoes, but if you do, I think the world will smile at you also. I know that my family will. No matter what.

Kennywood Lights!

and the kindness continues...
After work a few nights ago, I picked up the girls. On our way home, I planned to stop at the grocery store because it was Heidi's day to bring snack to school. Well, Nora fell asleep. Really not wanting to wake her in the bright, loud store, I dropped the girls off at home with Ad and went to the store alone. For any mom of youngsters, this is like a mini vacation, is it not? I took my time, talked to my mom on the phone, and slowly weaved in and out of each aisle. When I turned around, a woman with an incredibly kind face was standing there. She was the kind of pretty that doesn't need make-up to be radiant. She asked me if I was Nora's mom and she handed me a $50 gift card to the store we were standing in and said, "Merry Christmas." I have always pegged myself the person who doesn't react appropriately to surprises. I cry, smile, laugh at all the wrong/weird times. Typically, a gesture like this would have brought me to immediate tears. I still can't believe I didn't cry in that store. If you are reading this, kind Jeanie, I ugly cried the whole ride home. I told you I would.

If you are in my closest circle of friendship, you know I am OBSESSED with music. Almost any genre, but most important, lyrics. I think these lyrics do justice to the 9 month journey our family has been on this year. I dare you not to cry...

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.

WONDER(ing) WOMAN

She did it. Again. Our girl completed her last round of chemotherapy. Again.

With a few line issues and 2 major vomiting episodes, our girl crossed the last finish line like the wonder woman that she is. Wonder Woman is the perfect costume for her this year, isn't it? I can't tell you a single fact about Wonder Woman, the comic book character, but what I can tell you is how my one year old has made me wonder this past year...

It started with wondering how Heidi would take to her, how she would fit into our family. It morphed into wondering when she would sleep through the night and hold herself up. Then, in the blink of an eye, the wondering turned to worries about her health and survival that most moms don't have to wonder about.

Of course I have those moments where I stay trapped inside that worry, because it is just so easy to go there. But, I can honestly say that I have less and less of those moments. Nora is a constant reminder to me that I don't need to worry, only wonder.

I am in constant wonder of Nora. I wonder how she can make it look so easy. I wonder how she can smile through the vomit-soaked shirts and literally run up to nurse Jen, even right after a dressing change. I wonder how I will tell her all that has happened to her when she is older, and how relieved I will be to have that conversation, staring at her in good health and carefree happiness. Most of all, I wonder how on earth I got so lucky to be the mommy of the 2 biggest blessings this earth has ever known. I wonder what God has in store for my girls and our family. I know that whatever it is, He will make sure we are ready, even if we don't think that we are.

I have never really cared for Halloween, to be honest. I hate being scared. I don't like blood (real or fake). I don't really even like dressing up (I am more of a 4th of July fireworks and Thanksgiving gluttony fan). But I am ready for tomorrow night. I am ready to make some beautiful memories with my girls and our family. I am ready to be in awe of Heidi's continuous transformation from cute, shy (not so little) 3 year old to beautiful, outgoing 4 year old. I am ready to watch Nora, who has been beating the odds for more than 2/3 of her life, run and play with kids who have never faced these same challenges. And to be honest, anyone who isn't familiar with Nora or her diagnosis, would never know. That is truly amazing! It makes you wonder, doesn't it...

We hope everyone has a beautiful, safe, memory-filled Halloween with a few tricks, but plenty of treats!

Last few hours of chemo

Nora is scheduled for CT & MIBG scans and a bone marrow biopsy on November 15th and 16th. We will, of course, update everyone on the results, but we do ask for your continued prayers that our little wonder woman can finally hang up her cape for good this November.

To finish up, Adam's favorite song for Nora...

ONEderful weekend.

I haven't written anything in awhile. Not because there isn't anything to say-but mostly because I don't have the right words to explain it. It is odd for me to not know where to begin or how to explain something. If I am better than average at even one thing in this life, it is communicating through writing. The past 2 weeks have been so strange. The emotional roller coaster of complete hope, devastation, finding strength, struggling to find peace...all while trying to maintain a smile and a normal, happy life for the 2 most-deserving girls on the planet. It is exhausting. It has been like running a marathon inside my head and heart. I thought the finish line was in sight, but just like that, it disappeared again. I have no choice but to keep going, no matter how bad it hurts. My mind constantly cramps up like a sore, tired muscle and each beat of my heart feels so solitary. So loud in my chest, I feel like strangers can hear each beat in the grocery store, where I stare blankly, trying so hard to remember what I am in there for in the first place. Everything reminds me of her. Of how far she has come and of how far she still has to go.

Halloween preview of our Wonder Women

 Believe me when I say that carrying an IV pole behind your daughter and listening to the constant pump of chemicals being pushed into her veins is not easy or fun. It is terrifying and completely unsettling. It haunts me constantly, with every thought eventually turning to fear of what is going into her and wondering if it is working. Over the past 8 months, I have had to wake myself out of nightmares of the future and how scary it could be. There is so much to be afraid of, but I am trying so hard to live in the now. I force myself to enjoy every single moment of my girls. I try to memorize Nora's deep belly laugh when Heidi is tickling her under her chin. I constantly smell her gorgeous head of freshly grown baby fuzz, that is once again thinning with this new treatment. I force myself out of bed at truly ungodly hours every night when she is crying out to be held in the middle of the night. Living this life is exhausting. Every single day, serious effort goes into staying awake, concentrating on conversations that should be easy and fun, and making sure we have made the most out of each and every day. No one knows when their last day will be. But no one knows more than us that it could be tomorrow.

Tired of being at the hospital for 6 hours...

Birthday Chemo

Throwing some birthday chemo shade...

 I am strong in my faith, but I am still only a human being. My exhaustion occasionally flirts along a border with anxiety and despair, but usually I am able to find the good in just about anything-given a day to think and a few good friends to remind me of what I have been given in this life. I do believe in God's timing and in His plan. I will never understand this fight, but I also know that it is not my job to understand it. He knows why. He knows how. He knows when. And most importantly, He knows her. He knows her better than I ever will. He loves her and He lives in her. When I can finally sift through the confusion and exhaustion and I truly think about all that He is and all that He promises her, I FINALLY find peace in this new normal life.

Helping dad clean the floors

So, with that peace comes fierce gratitude for 4 blessed years of motherhood!

 Nora's birthday came first-complete with a few hours of chemo treatments, but ending with frozen yogurt.

a rare moment of sharing caught on camera

Just after Projectile vomiting @ 4:30am on her birthday morning

FroYo cures everything

We had a modest, but perfect Ariel party on Saturday with family, the day before Heidi's 4th birthday.

minimal decor, maximum fun

3 Ariels showed up for the party

first time in 4 years Heidi did not cry at the singing of Happy Birthday

Sending off some Birthday Lanterns...

 

It was so nice to be surrounded by family and celebrate all of the blessings that we have in this life. I'm embarrassed that I sometimes need to be reminded to look for them. They are plentiful and they certainly outweigh the bad. Our girls are undeniably loved. They are happy and beautiful. They have an army of support and countless prayers on their sides. They have more than so many others. I am so grateful to be their mommy. They deserve the best this life has to offer, and I intend to do everything in my power to show it to them. 

Starting with Oakmont Bakery cake...