Let's WALK!

Tomorrow is an awesome day. It's a day of hope and community and commitment to children.  It's a day of thanks and a beautiful reminder of something we can do together to make the world a better place.

Escaping our room in May 2016

Children's Hospital of Pittsburgh played a major role in saving Nora. Her team, who I personally believe was handpicked by Nora's eternal Father, was absolutely the reason she is alive THRIVING. Dr. Shaw, Dr. Friehling, Ronnie Ekeroth (the bone marrow genius that she is), nurse Jen...the list could go on, but I would be too afraid to miss someone. The doctors, nurses and professional staff we have met over the years are nothing short of INCREDIBLE.

2 days into our first stay @ Childrens

Being told your child has stage 4 cancer was like being thrust into "the upside down" for all of my Stranger Things fans. The world as you know it completely stops. Your new world resembles the old one-the furniture, places, the events and even the people are still the same-but it is cloudy. There is a horrible film over everything and it is terrifying. Nothing sounds right, tastes right, feels right. You are looking for "the gate"-the way out-constantly. The big difference in this analogy is that you can't fast forward or stop watching during the scary parts, and when you finally find the gate, the story doesn't end there. 

"I got this, dad"

Our journey with Nora has taken us into several different "upside downs." Some were scarier than others, but all of them passed through the doors of Children's Hospital at some point.

 

Let me be super honest-I wish I wasn't walking tomorrow. I wish tomorrow was just another Saturday. That would mean February 23, 2016 never happened. That would mean no scars, no scans, no chart, no chemo, no IVs, and no reason to be scared. But we can't go back to life on February 22nd, so we move forward-because that is the only direction worth going.

First Annual WALK for Children's June 2016

Second Annual WALK for Children's June 2017

Tomorrow is a way to fight back. It is a way to show our strength and perseverance to the world. It is a way to say THANK YOU to those who saved not only our daughter, but thousands of other kids fighting unfair battles. Tomorrow is a day to celebrate those fighters, or champions, as they so deserve to be called. Tomorrow is a great day to celebrate being alive and to celebrate Nora's survivorship. To recognize the bright future ahead for our kids and the hospital dedicated to their health. I love my city. I couldn't imagine living anywhere else.

Meeting da Beard...again

I wish I didn't have reason to love Children's Hospital as much as I do, but when this life was handed to us, they rose to the occasion of carrying us through. They saved my child and in turn saved me. I hope you will walk with us tomorrow. But if you can't do that, I hope that you will pray for the children-past, present and future-that walk through those doors to be saved from illnesses and circumstances that they don't deserve. Miracles are happening inside those doors everyday and it couldn't be done without days like tomorrow!

What if...

So, I haven't posted in awhile. It isn't because I haven't had anything to say. It's really because I wasn't sure if anyone really wanted to hear it. Nora is doing so well, there aren't many medical updates. We are living as normal of a life as I ever could have expected, and I am so incredibly grateful for that. I truly am.

But, that doesn't mean there aren't lasting side effects that disrupt our lives every single day. As any cancer survivor can agree, the most obvious after effect is fear. Fear of the unknown. Fear of the future. Fear of the same things happening again-just not knowing when. Not knowing if. Simply not knowing...

I think any parent wouldn't mind seeing into the future, even if just for a moment. Just to make sure their children are growing up happy and fulfilled. To make sure they haven't "screwed them up" too much to lead a successful and independent life. To make sure there isn't anything they are forgetting to do, to teach, to pay extra attention to...

I don't know that most parents are just hoping to see that their child outlives them. I doubt that most parents, when daydreaming about their children growing older, tear up at the thought of a secondary cancer diagnosis or a relapse. Most parents don't worry that their child will develop infertility issues or disorders stemming from the toxins they watched (and signed 10 medical contracts in approval) drip into their child's veins. We did what we had to do, I know that. But, it doesn't make this part of our journey any easier. We are now fighting the other half of the cancer beast. The what ifs.

I wasn't planning on sharing this story with anyone outside of our absolute closest circle of friends/family, but right now is a time I am scared of one of those what ifs.

Nora has a lump on her forehead.

I noticed it on Easter Sunday, and that night I chalked it up to her probably bumping it in typical 2 year old fashion. Then, on Monday, the fear began to seep in faster than ever. Fear that comes with the fact that she is anything but a typical 2 year old. She comes with high risks, medical statistics, and frankly- she comes with the inability to make assumptions, especially medical ones.

I watched that lump the way an artist watches paint dry. I felt it, I put pressure on it, I kissed it upwards of 2000 times. I waited the EXCRUCIATING 5 days until her oncology visit, and then I calmly told Dr. Friehling that I wanted her to take a quick look at it. She examined it for longer than I thought she would need to. After much conversation about options, we decided to continue to watch it, but to hold off on taking action until her June 15th CT scan (unless we notice changes, or get more concerned).

For 27 days straight, I have thought about that damn lump. I still examine it daily (OK, if I am being honest, usually hourly when I am home from work). Some hours it completely consumes me, and I spend more time than I'd like to admit talking myself out of panic, convincing myself that tears will not make anything better for anyone.

Let's be honest about our options:

A CT/MRI scan.

Seems like it would capture whether or not my fears are founded. But if the suspicion is low (and it is low) that this is my worst fears coming true, than that is additional radiation exposure that my poor girl simply doesn't need. Will I finally be able to sleep again? Hopefully. But is it worth that extra risk? I don't know. And maybe that is the problem...I don't know, no one knows. That ability to see some semblance of the future would be so handy right now. But...

Because miss Nora will already be in the CT machine, already have an IV placed, already have drank the contrast on June 15th, we are hoping to wait until that day to take a quick peek at her head, and rule out COMPLETELY that ugly WHAT IF rolling around in my head.

So, we will wait. Some days, I will cry to myself in the car or the shower, but I refuse to let cancer and the baggage it brings with it win. I cannot let it control my days, my precious time with my girls, my life, or my faith.

I have plenty of weaknesses. And perhaps my biggest weakness is written above in this blog. It is nearly impossible to put on a brave face all the time. I admittedly struggle with it daily, and I look to those who have blazed the trail for me (I'm looking especially at you, Lacie 😉). I am inspired by parents who remain faithful in grave situations and I am reminded constantly that faith can and does move mountains. For I am certain my little Nora Bean is proof of that.

I know how blessed we are to even be worrying about this. I know and have seen for myself how fortunate we are to be in this moment. I have both the responsibility and the honor of making every moment count, and trust me when I say I intend to, even in those moments that I am scared. I also realize that it's OK to be scared. That doesn't mean I don't have faith. It doesn't mean I am not consumed with gratitude and love for my Lord. It doesn't mean I don't trust in Him to fulfill His most gracious plans for all of us, especially Nora, my warrior baby.

Being an open book about who I am and my personal struggles with the life my family lives is not always easy, but I have been reminded recently that this blog, and the messages and truth I have shared in it, can be helpful to others. (Thanks, uncle Paul!) I write what I feel, and I open myself up to judgement and opinions that might not always be on my side, but if this blog is helping even one person get through an obstacle, even in some small way, then as a mom of a warrior child who is still with me, it is my obligation to keep writing. I hope you will keep reading.

Good Luck Charm*

When it comes to luck, I am skeptical to call  Nora "lucky" per say, but I do know that things could have been worse. (see below for a PSA on this subject).

When we found out that Nora needed more chemotherapy after her initial 8 rounds, to say I was devastated would be a COLOSSAL understatement. I couldn't believe it. We did all we could. Her tumor had shrunk more than 97%.  She looked great! It was the part I was dreading. It was the bone marrow. I knew the bone marrow was going to be tough...I was indescribably scared. I would say throughout this entire journey, that moment was the biggest test of my faith. That might seem strange, but it really was.

So we started 2 additional rounds.  These were a week long each and they started in clinic and ended in our home. They were tough, but so was she.

The first day of what would be her last round (even though we didn't know it), she wore her Wonder Woman onesie. She was Wonder Woman, so it was less of a costume, and more of her uniform. 3 weeks later, she was in the MIBG scanner.  One week after that we heard the news we longed to hear for 9 months-"CLEAR. CLEAR BONE MARROW!!" 

    

I guess the realist in me knows it had nothing to do with that onesie, but when I look at her even now, I remember her in that onesie, walking through the halls of 9C, Adam pushing her IV pole beside her. I remember wondering if she would ever be able to hang up that uniform?  Would her life continue to be a fight forever?  Will she get the chance to play and run and swim and take dance class and ride a bicycle...would she always have to fight to live? 

I kept that onesie in a special box in the attic after we got that call that her fight was over. I wanted to show it to her one day. A day when she is old enough to hear all that she went through. I knew it would be a scary talk, and I knew it would be great to have that onesie so that she could see how small she was, how long ago it all was...and how far she has come.

Then a few months later, I got a message.  A beautiful young mom in Florida was going through the same life we did. Her precious baby was fighting an eerily similar fight to Nora's, at the same age-and remarkably-with the same doctor Nora once had (Dr. Shaw). Dana and I wrote back and forth for a few weeks when I realized that her sweet girl, Livy, needed something more than we did. She needed that uniform. She, too, was already Wonder Woman. She just needed to put on that cape and finish her fight as well.   ((Livy's Page))

Livy during treatment

It worked! (OK, so maybe her doctors, her chemotherapy treatments and surgeons helped as well), but she got to hang up the uniform too. She got to go swimming this summer. She will be able to start catching up on her vaccinations soon. Her hair is coming in beautifully!  Livy is as much an inspiration to her family as Nora is to ours...and  we love her dearly,  having never even met her!

Livy this Halloween

Well, her diagnosis anniversary (yes, that is unfortunately a thing for families like ours, and it's very hard to forget dates like that no matter how hard you try) was yesterday. Her mom had a beautiful idea to do something good on that day, to make it into something positive. (How cool is that?!) So, Livy will be passing the Wonder Woman onesie on to another little girl fighting neuroblastoma as well. Her name is Alyssa Renee (if you would like to add her to your prayers). We pray that when she puts on that cape, she feels the strength of Livy and of Nora behind her. We hope it gives her the fight to keep going. We know she doesn't need "luck," but we also know the healing power of positive thinking and of strong girls, like ours.    ((Alyssa's Page))

It gave me chills when Dana told me her plan. When I told Adam, he said the hair on his arms stood up. We know this is the right thing. We will keep Livy and Alyssa in our prayers, but I thought it would be fun to share a heartwarming story with all you Nora's Warriors out there. You can't unsee Childhood Canceror or pretend it didn't happen to you, so instead, you have to find a way to rise to the occasion and support those who wear the shoes you once wore,  no matter how sad that makes you.

 

PSA- The fear and anxiety that follows a family who has had a child fight cancer is REAL. No matter how many rounds of chemo, surgeries, scans, biopsies, relapses, years in remission, etc. Please don't tell the mother of a cancer survivor that she is lucky or should be grateful because "it could have been worse". Even if you mean it with the best of intentions, it is just not the right thing to say. Ever.

Nora working on her "homework" like Heidi

And just like that...

Nora is 2.

I swear she looked like this just yesterday:

I wrote something kind of sappy, but I decided that today- this post is for Nora. So, I will write it just for her, in a way that she would want to read it.

This past year...

She has ridden more than 100 slides.

A conservative guess of popsicles eaten would be 1000.

She swam in the ocean.

 She speaks more words than most 4 year olds.

She watched fireworks (and not from a hospital window).

She built a sand castle snowman. 

She went to the dentist (twice!).

She met the Paw Patrol. 

She pooped on the potty (once, hopefully more of that to come!)

She went to 2 amusement parks. 

She was a flower girl. 

She has had roughly 200 baths. 

She has taken 2 dance classes.

She has sat in at least 50 time outs.

She wore pig tails. 

She says "I love you, mommy" without me saying it first.

She drove the ridiculous Cinderella carriage.

She rode a bike.

She went camping.

She rode the T.

She sings Happy Birthday.

She found her Easter basket all by herself.

She has eaten at least 50 lbs of mac n cheese.

She knows all of her colors.

She would wear her "Rubble Shirt" (Paw Patrol shirt) and Anna jammies every single day, if I let her.

Her first year on earth was tough. Her second year was one for the record books. I can only hope that her 3rd year beats them all...

Morning Decorations

Nora Beans, you are mommy's heart. You make me brave, even when I don't want to be. You challenge me with your strong will, but it's that will that gave you life, so I will adjust. You and your sister give me hope that this broken world will survive. I know it's a better place because of you. Shine bright always, my love bug. Mommy is so proud of you!