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!

Light it up GOLD!

September never really meant a great deal to me. Of course there are special days in this month that I celebrate some birthdays of friends and family, but for the most part, September has never been a super exciting month in my life.

Nora, day 1.

I wish I didn't even have to say it, but September is Childhood Cancer Awareness month. I know it might not sound exciting. Heck, it might even sound depressing. Who wants to focus on such a sobering, tragic topic for a single day, let alone an entire month?!

Me. I want to.

Nora, day 2.

 I thought I knew more than most about cancer. But 20 years, 3 grandparents, 2 parents, and a handful of good friends later, I still had never heard of neuroblastoma. In fact, when Dr. Pokorney said the name over the phone, I had no earthly idea what she was talking about. When we got down to the triage area in the ER, it was mentioned again, and it sounded even uglier the second time.

Nora, day 4.

Talking about it is still not easy.  In fact, the lump in my throat is growing just typing this very moment. I still burst into tears at random times for (to the woman at CVS on Monday) no apparent reason. Seeing my girls fight over a toy is less annoying to me than to the next person because there was a time, not long ago, that I wondered if I would see that happen. And even though, with each passing day, and each clear scan, I have tried to settle into a normal life again, I am slowly realizing that our journey with cancer will never be over. The shadow it leaves is quite permanent. And I think I can speak for all of the other strong and beautiful families I have met throughout this tumultuous ride-theirs aren't likely to end either. The fear and anxiety can be crippling and the appointments are constant reminders of what can happen, no matter how hard you will it to stay away.

Childhood cancer is real. It's real for the children who must fight to live. It is real for the moms and dads who sleep in hospital cots, listening to monitors day and night. Parents that hold their babies of all ages while a nurse, dressed in a full hazmat suit, hooks up toxic chemicals to their child's IV pole. They know it's not safe, but they know it's necessary. They know that the only thing that can possibly stop those cells from dividing is what is in that horrifying bag marked with a huge fluorescent orange CAUTION sticker, as if they needed a reminder of how dangerous it is. And then they watch that liquid make it's way through the tube that connects to their baby's chest or arm, and they pray. Sometimes they cry. Sometimes they do whatever they can to distract their child and themselves. Sometimes, in the good fortune that their child is sleeping, they stare at them in disbelief that such a physically small being can muster the kind of strength it takes to fight cancer. One year later, I am still in complete AWE of Nora's strength.

Families that spend days, weeks, months and even YEARS apart so that their child can have a chance at the life they deserve. Childhood cancer is far from normal, but for some families, it becomes normal. Giving your child daily injections, a counter full of prescription bottles, where regular bottles used to dry. When your 3 year old helps flush her sister's port as part of her normal bedtime routine. When a slight fever turns into a blood infection, 2 trips to the ER and weeks of delayed treatment to recover.

It can be very difficult to find reasons to smile while your child fights for her life. Most days, you have to truly look for them. And some days, the really tough ones, you have to create them out of thin air.

Childhood cancer takes strength. To tell you the truth, it takes more strength than I knew I had. I still marvel at how our family was able to get through 2016. We were lucky. We live 20 minutes away from one of the 10 best children's hospitals in the country. Our families live close by. Our friends have had our backs since day one. We realize not everyone has had the same support. Those are the families we pray extra hard for each night.

Last "scheduled" round 8/26/16

Last "actual" round 10/24/16

While I don't have a single complaint about Children's Hospital of Pittsburgh of UPMC or a single nurse or doctor we have ever encountered there, I can't even tell you how much I wish childhood cancer research got the attention it deserves. Waiting for an open bed and delays in clinic appointments are the harsh reality that there are too many. I want to shout it from the top of my lungs until celebrities and athletes are wearing gold and drawing constant attention to such a worthy cause. I want to see gold cleats in the Steeler game in Cleveland next Sunday. I want gold to be as popular and common as pink. My little girl is worth it. Basil. Livy, Caiden, Emery, Amelia and every other neuroblastoma patient that we don't pray for by name each night is worth it. Every single one of the 43 kids diagnosed with childhood cancer daily in this country is worth it. Let's show them how much we care and LIGHT IT UP GOLD!