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!