September is Pediatric Cancer Awareness Month, and I wanted to make sure I spent some time, over the next few weeks, writing and sharing some intentional blog posts with you. The goal of the month is to create awareness, and awareness creates funding, which allows for research and new medicines and cures. Today’s post is an intro of sorts, a peak into those first early days last April.

The first week or so that Brynna was in the hospital after her diagnosis, I didn’t share any vulnerable pictures of her. I didn’t know how, I didn’t know if I should, I didn’t know if I could. It took me months before I was ready to share those early hospital days publicly, but y’all, THIS is childhood cancer.

It rips your heart right out of your chest, you don’t have time to breathe. You don’t know if she’ll ever wake up, you question everything you did and said…was it enough?! It forever changes the course of your life, it forever changes your life, it forever changes your family. Dreams and hopes are dashed in an instant. You keep going as a parent, because you have to. You keep going for your child, for your other children, for your spouse, for your family. All you want to do is lock yourself in a room and cry for days on end, but that’s not an option. You must rally, you must be present, you must make decisions. You sign soooo many forms for medications and procedures with insane, horrible side effects (immediate and long term), knowing that all you want is to have your child there to deal with these long term side effects later. You look at your spouse, and declare right then and there that THIS WILL NOT tear you apart. You recommit, you learn grace and patience and love beyond what you ever knew. Your love grows in a deeper way. You watch your spouse break down and you aren’t sure your heart could hurt any more. You look at God and wonder WHYYYYY, why our little girl!??? But then all you can do is grip onto Him, because without Him, you would be so lost. You find out where your faith is truly placed. You find out what matters most. You see your parents drop everything, alter their entire lives, to be there in ways you didn’t even know you needed. You find times to break down, and you find comfort from the outpouring of support. You try to stay upbeat and positive, while it feels like your life is being trampled on. You find the joy in all the little moments, because it IS there. You hear the beeps of the hospital machines in your sleep, and wake each morning enjoying those blissful 10 seconds before you realize it was NOT a nightmare. You wonder how you can be 100% present with your child in the hospital, but 100% present with your other children at home who also desperately need you. You savor the last few days of those beautiful blonde curls and long eye lashes, because you know her hair will never be the same again. You wonder if you should shave your head too. You think about your insurance and wonder what and how much they will cover…then you feel guilty even thinking about that because you know that you would pay or give up anything to help your child get better. You earn a medical degree in 1 week, or so it seems by the crazy amount of medical-ese thrown your way. You know you will forever have PTSD, and no sickness (with ANY of your children), will ever seem “normal” again. You cling to hope. You cling to each other. You cling to God. You find that the only prayer your heart can cry out is, “please God, please God, please, please, please don’t take her. Please God, heal her.” You wonder how you missed it. You wonder if you are to blame. You wonder and worry about your other kids. You survive. You put one foot in front of the other, you put a smile on your face when it’s needed, and you walk in faith. You trust that God will never leave you or forsake you. God has never felt closer. You KNOW that God is present, He loves you, He loves your child more than you could ever know. He fills the room, He holds your child, He holds you. He is a good God. No matter what, you believe 100% that God is good. And He whispers to you, in the midst of the darkest night, “Watch what I AM can do.” And that becomes your mantra, your foundation, your hearts song.

THIS is childhood cancer.

Months and years down the road, things start to “normalize”, but it never actually becomes “normal” again. It will always be OUR “normal”, but not the old normal (if normal is even a thing). You find joy in all of the little things. Your heart soars when you get to do such mundane things as take all 3 kids to the grocery store or walk into church as a full family of 5. Your heart just might burst when you see such genuine, amazing smiles on your kids and watch them play together and declare each other their “best friends”, day in and day out. You soak up as much as possible, knowing from experience, that we have no idea what tomorrow may hold. 

This is childhood cancer.

“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.” – Unknown (and found from a friend’s FB page). 

Did you know that childhood cancer is NOT rare? Did you know that…

• 1 in 285 children will be diagnosed with cancer.
• 43 children per day or 15,780 children per year are expected to be diagnosed with cancer.
• More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age. These health-related issues are side-effects of either cancer or more commonly, the result of its treatment.
• Cancer is the number one cause of death by disease among children.
• Since 1980, fewer than 10 drugs have been developed for use in children with cancer. Only three drugs have been approved for use in children. Only four additional new drugs have been approved for use by both adults and children.
• The average cost of a stay in a hospital for a child with cancer is $40,000.
• Only 4% of federal government cancer research funding goes to study pediatric cancer. The amount given to prostate cancer research is more than ALL the pediatric cancer funding COMBINED. 

Facts from Nationalpcf.org