All that glitters is GOLD.

I can't believe tomorrow is September 1st. Not because summer flew by before I had the chance to realize it even started. Not because Nora's big sister, Heidi, has now been in full day kindergarten for more than a week. Not because the humidity in Pittsburgh makes it feel like it's July 62nd instead of August 31st.

Exactly one week pre-diagnosis

I can't believe September 1st is here because this is such an important month to me now.

Tomorrow marks the first day of 30 days dedicated to raise awareness for Childhood Cancer.

Hours after diagnosis

You might think you know what childhood cancer is. You've probably seen the commercials. You might have cried while listening to the St. Jude telethon. A simple google search will certainly pull up a celebrity posing with a bald little girl or boy in a mask. You probably think you know how terrible it is. You don't.

Nora, week 1. Holding her IV line through the night.

While I, of course, believe all cancers deserve awareness and funding, I remain SHOCKED at how incredibly limited the funding is for Childhood Cancer.

Nora, after 1 round of chemo down, also SHOCKED at these facts.

Here are some facts that might surprise the heck out of you:

1 in every 285 US children will be diagnosed with cancer before they are 20 years old.

Worldwide, almost 700 kids are diagnosed with cancer each day. 43 in the US alone.

Almost 90% of all childhood cancer patients will suffer from long term side effects of their treatment.

Childhood cancer is the leading cause of death by disease in children under 19 in the US.

Childhood cancer is not 1 disease. It is made up of more than 12 major types with over 100 sub types.

Despite these scary statistics, Childhood Cancer receives just 3.8% of the annual budget from the National Cancer Research Institute.

My brave chick during round 2

Much of what we know about treating adult cancers was learned from childhood cancer research. Combination Chemotherapy is just one of those findings, but I personally know more than one adult who benefited from that research.

I hope these facts shock you. I hope they upset you and compel you to do more. Even if I didn't experience childhood cancer inside the walls of my own home, even if I didn't watch my daughter lose her gorgeous baby hair or have to flush her port daily, even if my family wasn't forever changed by Childhood Cancer, these facts would torment me. 4% is not enough. It is not enough for these kids who have barely had a chance to live. Kids that should have full lives ahead of them, now fighting for each day. We can do better than 4%. 

We HAVE TO DO BETTER.

We have to do better for Ezra, Riley, Emery, Ryan, Trinity, and the thousands of other little ones who earned their wings before it was their due time. Maybe I have more fight in my lungs because I have seen too much. The needles, the vomit, the steroid rage (yes, even in infants), the mouth sores, the sleepless nights, the scanxiety, the medical forms, the bills, the worry...this list is only longer for most parents dealing with Childhood Cancer. 

We are blessed to have Nora with us every single day, I certainly know that. But, that only pushes me to fight harder for the other moms. For the moms who only have memories where hugs should be. That could have been me. And, if I am being honest, I know it is still a very real possibility every single day. It's exhausting living each day as if it might be the last good day, but I still have enough energy to fight for #morethan4 .

Please be aware. That's all I can really ask. Know the facts. I can't ask you to act on them. But, if you want to, there is so much you can do-WE can do-together.

Here is just  ONE way you can help. This app just rounds up your change to the next dollar. How easy is that? You don't even have to remember! You can set a monthly cap, and choose whether you want reminders or not. BeatNb is an amazing organization led by Kyle Matthews, whose son, Ezra fought neuroblastoma like an absolute warrior, but is not here because the treatments to fight with are just not where they need to be.
Every cent (that you won't even miss) is going directly to BEAT NEUROBLASTOMA. Every single cent.

https://beatnb.harnessapp.com/roundup/

Fear(less). Trust more.

I wish I could say I was never scared. I wish I could tell you that my faith in God is so strong and so unwavering, that my trust in Him and in His plans has never faultered. I wish I could tell you that I never asked Him why, never got angry at Him, never told Him He couldn't have Nora...as if she was ever anyone else's child to begin with...

Nora's favorite ride at Idewild

We had a scary last 2 weeks. On Friday, June 29th, we were all packed up for camping. I was driving up Burchfield Road, my mind only on moving the food for the weekend from the kitchen to the camper, putting the bags of clothes in the truck, remembering the puddle jumpers, making sure I pack the girl's toothbrushes...my mind was anywhere except where it was about to be.

I heard my phone ring on the passenger seat. I had just hung up with Ad. He was supposed to pick something up at GE for me, and I assumed he had already forgotten what it was. I seriously rolled my eyes when I heard it ringing. But luckily, I looked before I swiped to answer it. It said Children's Hospital across the screen. It was 5:30pm, what in the world...

Walk for Childrens 2018

Dr. Friehling was on the other line. She asked how Nora was. I said she was great. She then sent every organ in my body into my legs. She told me Nora's urine had come back and one of the markers was too high. Nope. Not now. Not ever. This cannot be happening. It just can't.

I asked what could cause this. We went over some scenarios, none of which made me feel one iota better. She asked that I bring Nora back to Children's Monday for another sample. I agreed, and within a few minutes, I was pulling into our driveway. I can't even be sure how I got there through the sobbing.

Nora the Warrior

Heidi the Best Big Sis

Adam got home, and we cried. We prayed. I asked him how on earth were we supposed to go camping with friends at a time like this? Our whole world is hanging in the balance, and there is NOTHING we can do but wait. We talked about it and agreed that we had to go. The girls would be crushed if we didn't, and staying at home wouldn't change anything or make us feel any better. So, slowly and through a thick fog, I packed up the rest of our camping supplies. What a lonely drive. Nora was asleep, and Adam and I took turns quietly crying to ourselves, trying to shield our eyes and disguise our sniffs from Heidi.

   

It actually was a nice weekend. (We have some great friends and our girls had the time of their lives). Of course, we never spent a second not worrying, but we did laugh. We got to talk about things other than pediatric cancer, and we got to spend the weekend immersed in our girls. There was no better place we could be.

Camping with Friends!

On Monday, I took Nora to the Frog clinic at Children's and we left her pee. I can now honestly admit that I talked to Nora's urine sample. I begged the HVA level to be normal. I asked that it give my girl life and strength. I prayed over it, and then I closed the cap and left it in the window with her name and birth date across the front. I couldn't stop looking at it, willing it to be OK.

Just dropped off my pee...gotta see the trains!

I knew it would be a long week, and boy was it ever. Even with 4th of July in the middle, those days crawled by-getting longer and more excruciating as they passed. Every time my phone buzzed or dinged, my heart sank just a little more. I can't really describe what it is like to wait for a phone call like this. The type of call that could change every single piece of your life. This isn't new to us. These periods of waiting...wondering how on earth the world around you is still moving, as if nothing has happened. How has the earth not actually stopped turning, because it sure feels that way? The nerve of it, really...and on top of that, I am expected to go to work? To function normally at all? To have conversations, make dinner, play games, read bedtime stories as if nothing has changed? These are the days that I know I am stronger than I give myself credit for.

4th of July fun on the deck...

I bend and I break and I cry (man, do I cry), but I get through. I read those stories and I put the bubbles in the bath water, and while I am having those conversations, I am praying. I always wonder if other moms, the ones who know first-hand how fragile their children's lives really are, if they also plead with God. If they attempt to make deals and promises, knowing full well that's not how it works. But in those moments where the helplessness takes over, and desperation is closing in on your throat, am I the only one who says things like, "I will never talk bad about another person, swear or lose my temper, etc if she can just get through this." ...just in case that would sway Him to put the cards back in my favor. I know it seems silly now, and as I type it, it makes me cringe, but it's the truth. And until you are faced with this type of reality, you never know what you will do. Of that I am sure.

SO... I will fast forward through the longest days of 2018 to share with you that this post ends well. Dr. Friehling called Tuesday night to tell me that Nora's recent sample (yes, the one I spoke to, prayed over and secretly threatened) was normal! She said the high HVA could have been caused by diet or been a lab error, and there is no way to know for sure which it was, but summer can go on as planned. Her next oncology appointment isn't until September, but we will drop a pee sample at the Frog in August, just to be diligent.

Holding baby Jameson after church

I am a faithful servant of the Lord. I trust in Him and I love Him more deeply than I can explain with words, but I am also human. I have countless flaws and weaknesses, and in times like these, they sure do show their ugly colors for the world to see.

Trust must be tested, or it is meaningless. I could say that I trust something or someone, but if there is never doubt or temptation or a test of it's strength, is there really worth in it? I wish my faith didn't need tests like this, but I know it must. Being a parent requires trust and faith of all kinds, but being the parent of a child with cancer requires a new level of those things...a level I strive to reach every single day. The plan in place for Nora (and for Heidi) is one that has very little to do with me or Adam, or earth for that matter. My girls were chosen to be mine for a time, and I don't have a heck of a lot of say in just how long. I so wish that I did. The human in me wishes I knew the plans, the future, the glory of who my children are in His eyes. But I will remain faithful, and trust in God that His plans are the ultimate good, for no one loves those two girls like He does, not even me (though I know I am at a verrry close second).

Facing my child's mortality is something that I am certain will never get easier. In fact, I actually imagine it will only get harder, as it has with our 2 scares so far this year. I have been reminded to stay grounded in my faith, and even though it can be a struggle (more often than I'd like to admit), I will never stop working on it. After all, faith is a living and breathing thing. If it's not growing and changing, it is dying. I will not let it die, and my girls will know and see just how alive it is!

Friends that are Family

Thanks, Aunt Judy, for introducing me to this song. It got me through those 11 long nights of waiting...

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