Since the moment Peyton was diagnosed with Leukemia we were taught that everything in our lives depended on one piece of paper.
It told us if she needed blood products.
It told us how strong or weak her immune system was.
It told us if her liver wasn’t working properly, if her body was fighting infection, if anything was suspicious.
We, quite literally, lived and died by that piece of paper.
I have every single sheet of blood counts a nurse ever laid in my hands….3 hole punched and placed reverently in a binder. I have the history of her blood for the past two and half years documented and preserved…the highs, the lows, the almost normal and the devastating unsure.
The Monday before our monthly clinic appointment is a hard one, because Tuesday is always our day, and I struggle with what the sheet might say.
Praying for good numbers, high numbers where they’re supposed to be high, low numbers where they’re supposed to be low.
The knowledge always there that they could come back wrong.
Each month I sit in the chair next to Peyton and wait for the magic machine to churn away and print out the papers…for the lab tech to clip one copy to her 8-inch thick treatment binder and hand the other to me.
I always close my eyes and say a prayer before I look at the numbers.
Every month they’ve been perfectly where they’re supposed to be and all my air rushes out in a breath of relief and joy.
I sat there today. I waited through the ritual: poke, blood, machine, printer…
…then the slightest hesitation before handing over the paper.
WAIT. We don’t hesitate before we hand over the paper. That’s not part of the ritual.
I couldn’t close my eyes, but I still said my prayer.
I hoped God understood my muttered, “no, no, no, no, no”.
And I looked down at the sheet.
It almost didn’t connect at first. I struggled to find the numbers I expected…hoped…to see, but they weren’t there. In their places were numbers that were horrifically and cosmically WRONG.
EVERYTHING WAS TOO LOW.
Her hemoglobin was too low, her platelets were too low.
And not too low by a small margin, it was a dramatic and damning drop.
This was cancer back low.
I felt my heart stop…like a rock in my chest.
I couldn’t draw a breath.
My legs went numb.
It took everything I had to not throw up all over the white floors.
She’s looking at me. My daughter is looking at me. She’s watching me and I can’t do this. She cannot see me fall apart.
I choked back every tear that burned like acid and I hid my shaking hands.
I shuffled her out of the lab and into an exam room. I could feel the tech’s eyes on me, I knew that SHE knew what I was thinking and I knew that SHE was thinking the same thing.
I looked at her and said, “I want a peripheral blood smear.” (A basic preliminary test to show if there are any cancer cells obvious in the blood)
Don’t agree with me!! Tell me I’m wrong and overreacting and stupid and I shouldn’t be allowed to even have children I’m so damn stupid!!! Don’t agree with me!
“We’re going to do it again, fingerpokes can be wrong. We’ll do it again by IV and see what the counts are. She’s had pink eye, it could just be her body fighting an infection again.”
Whatever, just do it.
Let me think about this. Let me process that this is THAT day.
And I went THERE, I said it over and over in my head…as if to familiarize myself with the phrase would somehow make the truth, when faced with it, easier to handle…her cancer is back.
She has Leukemia again.
Her cancer is back. Her cancer is back. Her cancer is back.
Peyton decided at that moment that she had to go to the bathroom and I took her down the hall, directly in front of the nurses station and the lab. The moment she went in, I saw the faces around me…nurses, doctors, techs…all smiling those reassuring fake smiles, talking to me in those low soothing tones, not coming too close, but staying near.
“When she comes out, we’ll pull more blood and run the tests again.”
And then we’d have the answer.
Whatever the answer might be.
I held her tight as she cried and screamed throughout the IV blood draw, something out of her comfortable ritual, new and invasive, painful and scary. I almost cried along with her, overcome with fear that we were heading back into this life of me holding her down, letting people hurt her and poke her and scare her again.
After it was over I almost couldn’t stand to feel her skin against mine. I wanted to reject the tears and the shuddering of her body. We’d done this all before, it’s supposed to be over.
But, I held her tight and rocked her as she recovered.
She grumbled, “The rubber thing hurted the baddest.”
Of course it did. Not the needle shoved in her arm. The plastic band used to get a vein was to blame for all the theatrics.
I smiled because no matter what, this child is a fighter.
The machine again churned and worked.
Did the man who designed this machine, the workers who assembled it ever dream that their creation would be the device that decided the fate of our lives?
The printer ran.
And the tech turned with the page waving in her hand.
A HUGE smile on her face.
She handed me the sheet of paper and my eyes scanned the numbers…normal…perfect…not low…exactly what they were supposed to be.
Her cancer is not back. Her cancer is not back. Her cancer is not back.
I know other things were said. Explanations of why fingerpokes can be wrong. Percentages are on her side to NOT relapse. Relief expressed that everything was fine. A collective sigh was heard over the entire clinic.
I could barely hear it. All I could even comprehend was that her cancer was not back.
It’s not back.
Thank you, God, for understanding my less than eloquent, one word prayer.
She’s fine and healthy and good for another month of cancer-free living.
And I? Will be spending the rest of the day with a bottle of wine, trying not to think about those moments..but failing miserably.
Don’t forget to enter the raffle to help Mandy Willis, an 8 yo brain tumor patient and a DEAR friend of ours!