September is Childhood Cancer Awareness month.
“Awareness“: (noun) knowledge or perception of a situation or fact; concern about and well-informed interest in a particular situation or development.
As a child life specialist, you could say I’m quite “aware” of childhood cancers and the implications that come with such a diagnosis.
For starters, I know the difference between ALL and AML, in terms of diagnosis and prognosis. I know the survival rates of stage 4 neuroblastoma (far, far too low). I know what a pediatric bone marrow transplant entails (for both the donor and recipient) and know the strict precautions that must be taken and the harsh realities that come with such intense treatment. I know that there is no cure for DIPG (literally a 0% survival rate) and that most DIPG patients will die a painful, progressive death (often within just months of diagnosis). I know that about 43 children will be diagnosed with cancer in the United States EVERY.SINGLE.DAY. I know that only 4% of the national cancer society’s funding each year will be allocated to childhood cancer research, even though cancer is the number 1 cause of death by disease and even though 2/3 of childhood cancer survivors have to live with severe long term effects of their treatment (including infertility, hearing and vision loss, and secondary cancers).
So yeah, the basic data, I know. The percentages and dollar signs are permanently worn into my brain. But beyond that, what is it that makes me really “aware”? That makes me so passionate about shouting this message from the rooftops and spreading awareness everywhere I go?
The truth is, there are things I know that haunt me and affect me far more intensely than just the striking statistics.
I know the look on a mother’s face at the exact moment in time when she is told her child has cancer after a “routine” ER visit for a sore throat; the exact moment when the world as she knows it ceases to exist.
“But he was fine just last week…..”
I know the types of questions she will ask me when the doctor quietly leaves the exam room and she is left to process this information.
I know the general ways in which I will respond, the words I will desperately grasp for in an attempt to comfort her – all the while knowing full well no words, no actions, nothing can ease the type of pain she is currently experiencing.
I know the feeling that will come over me as I choke back my own tears, the tightness in my chest that I will feel while sitting in silence with my hand on her shoulder.
I know the types of questions his siblings will ask when they are told he has cancer.
“Is he going to die?”
I know the look of panic spread evenly across an entire extended family’s faces while they sit in the waiting room, wondering if the surgery will be successful.
I know the look of doubt and paralyzing disbelief on a mother’s face as she signs a DNR/DNI form for her young school age child, who was healthy and playing soccer just months before.
“How is this happening? I can’t believe this is happening. This. Isn’t. Happening.”
I know the way that tears stream freely and quickly down a teenagers face as she notices the first evidence of hair loss left behind on her pillow.
“I just didn’t think it would happen this soon…”
I know the confusion and guilt that comes when a child learns their best friend from just down the hall has died – and their standing playroom date has suddenly come to a screeching halt.
“Does this mean I’m going to die too?”
I know the look of understanding and camaraderie that weary family members give each other as they cross paths in the hallway – an entire empathetic exchange in just one glance.
I know the disappointment on a patient’s face when they learn their counts are still low- meaning they can’t leave the confines of their tiny hospital room – not even to go into the hallway.
I know the look of shock on a mother’s face as she walks out of the ICU and watches tearfully as the elevator doors close behind her- for the very last time.
I know the piercing sound of a mother’s wails from down the hall when she is told that her child’s cancer has returned once again.
“I’m so sorry, we’ve done everything we can…..”
I know how deeply and painfully a child’s death can affect all the hospital staff who knew and loved her.
“I still can’t believe she’s gone….”
I know the way that my own stomach will tie in knots every time I see something or hear something that reminds me of one of my patients who wasn’t lucky enough to survive
“that was her favorite show; his favorite song; she would have loved this….”
I know what it feels like to return from a week off of work only to find an invitation to a familiar patient’s funeral hung prominently at the nurse’s station
“I wish I could have seen this one coming…”
I know how my heart will ache, forever longing to be able to do something more for those family members and forever wondering what their future will hold.
Most of all, I know that childhood cancer is never something that is left in the past – it stays with those who have been touched by it, those who have had their life completely and utterly changed by it – forever.
But, I also know the look of victory and pride as a young patient makes it to the playroom for the first time in months without using their wheelchair.
“I DID IT!!!!!”
I know the confident, brave, courageous look on a patients face as they are wheeled into the OR for an extensive and risky debulking surgery.
“It’s okay mom, God is in control now…”
I know the look of pure joy on the teen patient’s face as she dances the night away at hospital prom with all of her best friends, finally cancer free after years of treatment.
“Oh, don’t you dare look back
Just keep your eyes on me
I said, “You’re holding back”
She said, “Shut up and dance with me”
This woman is my destiny
She said “Oooooh, shut up and dance with me”
I know the look on a fierce Mama Bear’s face as she fights for better treatment for her child.
I know the way a child calmly reassures a peer who is about to undergo a similar scary procedure.
I know the look of appreciation on a tired mother’s face when an anonymous donor has a hot meal delivered right to her hospital room.
“I just wish I could tell them thank you…I haven’t had a home cooked meal in months”
I know the sigh of relief and the reluctant smiles that come when the scan results finally come back NED: no evidence of disease.
I know the contagious giggles that sneak out and can be heard down the hall as we have a Taylor Swift dance party together, briefly forgetting we are in a hospital at all.
Most of all, I know that childhood cancer warriors and their families are among the most noble, brave, intelligent, and heroic humans in all of the world.
As much as I might wish I had never felt the pain of seeing a child die from cancer, felt the heartache of seeing a family torn apart by such invasive treatment, I would go through every single moment – the good, the bad, and the terrible- all over again just to witness the incredible strength, courage, and bravery firsthand. Not many people can say that they were lucky enough to be a part of such intimate moments. And I’m proud to say that I have.
Don’t get me wrong – it hasn’t always been graceful. I have cried in the nurses station, the playroom, the bathroom, my car, and in the back row at church more times than I can count. I have pleaded with God to show me a medical miracle in the kids standing right in front of me. I have spent late nights lying awake begging Him to spare families that I care about from the ultimate heartbreak – the ultimate nightmare. I feel all of these things more deeply than I ever imagined possible.
The truth is this: I may from time to time call myself the “hospital teacher”, but I have learned more from these kids and their families than I could ever have taught them – important things like confidence, courage, forgiveness, bravery, patience, perseverance, trust, optimism, friendship, loyalty, faith, and so much freaking LOVE.
For all the incredibly brave survivors I’ve met that I can never mention or thank by name, for all the precious stories I can’t share or the details I cannot divulge : someday this will be YOUR story to tell, and I hope and pray your brave voice is heard by the entire world – because I, for one, know how much better and stronger and more full of love a person’s soul can be after they’ve been touched by your life, strong one. I can’t wait to see you soar.
A special thank you to the families who have graciously trusted me to be a part of your personal journey, whether it was for an hour or over the course of a whole year. I am thankful to you in ways I’ll never be able to describe, and I admire your strength more than you’ll ever know.
And of course, in honor of every single brave childhood cancer warrior I have met, and all the others I haven’t been lucky enough to cross paths with: you are my heroes, plain and simple. I promise to always be your loyal advocate, to be a voice on your behalf, and to never, ever give up on fighting for YOU.
Because you, my loves, are worth SO much #morethan4.
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