Heroes come in all sizes - and I've met some of mine

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.

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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.

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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 backJust keep your eyes on meI said, “You're holding back”She said, “Shut up and dance with me”This woman is my destinyShe 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.

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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.

How do you do it?

"How do you do it?" It's a question you get used to quickly working in the medical field, and especially pediatrics. You learn that most of the time your work stories aren't ones to throw in over lunch dates with friends. You share something you think was no big deal, or something that you see as a victory, and you look up to see some stone cold faces and someone says "But...how do you work with sick kids all the time?! I could NEVER do that"

It's a natural question, and I absolutely understand where it comes from. But it can be a tough one to answer depending on the conversation. Because beyond the lab draws, the IV fluids, spinal taps, conscious sedations, and appendectomies, there lies a world not well understood by those who haven't lived in it. Though we are truly the masters of child-like play and distraction, Child life specialists are often tasked with things far more intense than bubbles, toys, and medical procedures.

We respond to code blues, rapid responses, critical rescues, and trauma alerts. We (attempt to) remain calm in the most chaotic and emotionally charged situations.

So, great question. How do we get by? How do we convince ourselves to walk back into the hospital night after night? How do we leave work every night without leaving a huge piece of our heart behind in the trauma bay? Recently, I was hit with this question head on. Moments after his son was pronounced dead as the result of a tragic accident, a loving father looked me in the eye and between sobs said "I just don't understand how you guys can do this all the time." I had no reply. Because in those moments, I'm not always quite sure myself.

You see, We walk a fine line of emotions: too closed off and we aren't fully available to be compassionate, emphathetic, and completely invested when the family needs us by their side. Too emotionally involved, though, and we will take each loss much too personally. We love our patients and care so deeply about their families, but must sustain this passion for a lifetime. So, how do we do it?

I have sat with children while their parents are told that today's blood test results indicate a likely diagnosis of leukemia; I once was in the room while a fellow child life specialist and mentor told two young children that their (single) parent would die soon, likely within the next few days. I sat in the corner of the ER trauma bay trying my best to comfort a mom while her child was intubated and resuscitated. One night late into the evening I forced an anxious mom to eat saltine crackers and drink apple juice in the surgical waiting room while her child lie in MRI to evaluate her arm pain. The images later revealed what we were all dreading: an aggressive, cancerous mass. One rainy day in the PICU, I helped a family create memories with their child shortly before she was to be taken off of life support. I cried later, suddenly realizing I had just given that sweet baby her first haircut. And, perhaps most significant, the time I was asked to tell two beautiful young girls that within a day their sister would join Jesus up in heaven. It was my job to help them understand that she would never come back home with them. I realized that this would likely be a turning point in their lives that they always remembered, and felt the immense pressure of doing everything I could do make this better for their whole family. All of this and more, in just 2 short years of a very young career.

So yes, I understand the question, sometimes coupled with a horrified expression... "how do you do it!? " But the reality is this: there is beauty in these moments, if you choose to see it. You really have to look for it, but it is there, and my God is it good.

 In the middle of the night in the ER exam room, when the mom who just received the scariest and most unexpected news of her life tearfully thanks you for staying by her side so that she's not alone until her friends arrive. The patient from the trauma bay made it up to the PICU, and I later heard that his mom had told the medical staff she didn't remember the circumstances, but she felt like an angel had sat with her that night and comforted her. Months after the life altering cancer diagnosis,  when the mom from the surgical waiting room shares how well they are doing and says that she will always remember the few special people, you included, that were there to help in the beginning of their long journey. And then her beautiful daughter excitedly gives you a homemade cookie and wishes you a "happy valentimes day!".  And yes, even in the consultation room of the PICU, in between tears, on that night when you realize that though you've given family members the worst news they will ever hear, you're told you specifically were the one person who helped them to see God's shining light in the middle of such darkness.

Months later, I joined this same family to honor their sweet angel at the annual CHOC fundraiser - CHOC Walk in the Park. This family was so appreciative of the love and care they had been shown by the staff at CHOC that they wanted to give back by raising funds and walking in honor of their angel. I arrived, and to my surprise, many of their extended family members remembered me by name and were excited to give me a hug and thank me for coming. Realizing it might be one of the most redemptive moments of my career, I walked down Disneyland's main street, hand in hand with her two beautiful siblings from that memorable, tearful night in the consultation room.

We won't always be thanked. We're rarely appreciated. We seldom see the long term benefits of our interventions. We don't frequently get follow up with families. We're not always so fortunate to so easily see the beauty through the pain. To find the miracle in the midst of the suffering. But in this beautiful moment in the happiest place on earth, I quickly wiped away the tears streaming down my face, and I could hear the voice in my head clearly.

"This is how. This is how I come back every night, even when it hurts.  And this is why"