Humbled by Humanity

Just 4 nights ago my breath was literally taken away. It has taken me so long to post about it because I am at a loss to find the right words. What I can say is that Friday, September 28th will be one those days for me. One that I look back on with fondness when I need a good memory to get through a tough day. When I worry about scans, urine, the stage 4 statistics...the days when I want time to stop because I am so afraid that future days will not be so sweet. I have been banking these days for almost 2 years. And while I do have many memories of which I am incredibly grateful, there will just never be enough. Never enough Friday, September 28ths.

How this all started...

Our good friend from Children's Hospital, Tracy, asked me a month or so ago if Nora would be interested in being the North Allegheny TigerTHON kid. I wasn't exactly sure what that meant, so she sent me some information on the THON event and it didn't take long for me to enthusiastically answer YES! 

Tiger THON is an incredible event...just check it out!

Tiger THON

What we knew before Friday (the THON kick-off event):

We knew the girls would be the honorary team captains for the football game, and that Nora would be doing the coin toss (although I didn't think she would actually be tossing the coin for an undefeated Western PA 6A team). We also knew the girls would be able to do some cheers with the cheerleaders and student section, but we were so unprepared for how incredibly moving the night would be, just how special Heidi and Nora would be treated, and how wonderful the student community at NASH really is! No matter what I write, or how I write it, it will not do the evening justice, but I am still going to try.

with Nurse Jen...our favorite!

When I say the red carpet was literally rolled out, I will tell you that we parked inside the gates of the stadium. If that isn't royal treatment at a high school football game, I am not sure what is! We were then granted full access to the track area with the cheerleaders, Tiger mascot, and players. 

Dozens of students came up to meet the girls. They played with them, chased them, held them and truly made them feel like they were the only 2 girls inside a stadium of thousands. When it was just about time for the coin toss, a short video played about our family's journey with Neuroblastoma (we shot it at the stadium just weeks prior). Please try to ignore the fact that Adam appears mute in the video. He is a man of few words...😂

We then walked across the 50 yard line for the coin toss. The referee, who can I just say was one of the nicest men I have ever met, handed Nora the silver dollar. She wanted me to go with her, so I crouched down just behind her as she tossed it into the air. It flew behind her and landed directly onto my back (of course it did!) and I thought that was the end of our (less than perfect) contribution to the game. As I grabbed her hand to walk back, the referee stopped me, and handed me a beautiful bouquet of yellow roses (unbelievable!). That was around the time that Nora and I both hugged him just before he placed the silver dollar into my palm and told me to put it in her scrapbook. 

This might seem dumb, but at that exact moment, I knew God planned this for our family. How did that man know that I do have a scrapbook (of sorts) for Nora's journey? How did he know that I have saved everything. It started out as a small box on the dining room table. It was the place we put every medical paper. Every consent to treat, every discharge booklet, every insurance paper, bill, diagnosis, appointment. The box started to fill up and it gave me anxiety. It stared to overflow and make me cringe with the bad days and memories wrapped up inside that box. But I was determined that one day the box would hold more good papers than bad. It had to become more than a reminder of pain and suffering. It needed to be a reminder of strength and determination. That damn box needed to be more than sadness. Nora's beads of courage, her check-ups, pictures of her last treatment, cards, letters, and gifts started to fill the box. The box became exactly what I wanted it to become. And now, it will hold a memory from the past weekend-the silver coin that signifies a chance. And Friday was our chance. A way to give back. To raise awareness. And, selfishly, a way to add a happy memory to our box, which is starting to overflow with good memories, drowning out the bad at the bottom.

We then walked back to the track, where Nora and Heidi were met with dozens of students-each one holding a sign and/or a red rose. As the girls walked (and I sobbed behind them), they were handed single red roses along the track, amidst a sea of signs of encouragement and yellow ribbons. At the end of the line of students high fiving, pounding and hugging our girls, were 2 build-a-bear boxes. (Both girls have slept with their bears each night since). 

The girls did do a couple cheers with the cheerleaders and were then also whisked away to the student section where cheers erupted for them. I just can't even IMAGINE how special they felt. What I do know, though, is how very much they deserved it. They have both been through trauma that I hope will be a distant memory one day, forgotten underneath all the good memories, just like the papers in that box on the dining room table. My goal is to give them 10 wonderful experiences for every single painful one. Being a part of NASH's TigerTHON is going to make that happen.

So grateful for all of our Nora's Warriors that came out!

Someone was sleepy at the end of the night...

Please MARK YOUR CALENDARS for this year's TigerTHON!

March 30th at the North Allegheny High School Gymnasium.

It is an ALL AGES event and we are so HONORED to be a part of something bigger than us and bigger than our story.

We want to make sure that NO CHILD FIGHTS ALONE!

#NCFA 

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...