By Abbe Walter
Ben will be 2 in two weeks. He is walking around the house with a book that sings the nursery rhyme “Rock-a-bye baby” when you open it. A different line sung for each page turned. He never keeps it open past the first page. Open, shut, open shut, open, shut. Rock-a-bye-baby! Rock-a-bye-baby! Rock-a-bye-baby! My 3-month-old Jake is napping in his crib and the August sun is pouring in thick like butter through the living room windows. At 9:00 a.m. sharp the phone rings. My stomach drops. My husband Brian looks at me from the next room. I take a deep breath and say hello, meeting Brian’s eyes. Brian immediately picks up the other extension in time to hear Dr. Khan ask me if someone is there with me, and me saying yes. “OK, good,” Dr. Khan says. “I’m so sorry but the blood tests we did yesterday, well, it looks like Ben has cancer, most likely leukemia.“
Brian drops the phone and collapses against the living room wall onto the floor crying, instantly, gasping for breath. I can hear him in stereo, through the phone and through the house. Dr. Khan says I can hear you are not alone, that is good. (Brian later tells me his first thought was that Ben was going to die. For some reason, death did not enter my mind at that moment though it certainly haunted me so many times in the years that followed.) I have no thoughts or feelings and I do not shed a tear. I am aware that I am not crying, but I don’t know why, and I quickly think that I should be crying. But I am not. I am numb, floating above myself, watching from somewhere else, hearing Dr. Khan speak, not understanding, not absorbing. Yet I realize that I am asking questions about how to proceed. Where do we go? What do we do?
I am staring at Ben, who is walking around with his book. Rock-a-bye baby! Rock-a-bye-baby! Rock-a-bye-baby!
One of us calls our parents, I don’t recall whom. Brian’s parents will come to our house to watch Jake and my dad will meet us at the hospital. Brian’s parents arrive; everyone is hugging each other except for me. They are hugging me. I am not hugging. They are all crying. I am not crying. I am staring at Ben. I am imploding.
By 10:30 a.m. Ben is admitted to New York University Medical Center. Ben needs to have an IV put in. I don’t understand why he needs an IV and I’m afraid it will hurt him. They take us into a small room. No windows. Ben is sitting on my lap and I am holding him and kissing the top of his head. Brian is standing next to us, his hand on my shoulder, a hand on Ben. A doctor attempts to access a vein. Ben screams. Tears spring from Ben’s eyes, from my eyes. The doctor shakes her head and says, it didn’t work, let’s try again. She tries again, shakes her head again and says shoot. I ask what’s wrong. She explains how his veins are so tiny and so fragile. The veins often collapse. It can be tricky, she says. I ask if there’s anyone else who can try.
At 11:30 a.m. there have been so many pokes and so many collapses, so much screaming and so much crying, that I am certain Ben, Brian and I have all been permanently punctured. Now there is a small army of doctors and nurses in the small room and I am incredibly hot. Sweating. By now, the room is totally dark except for Ben’s beautiful little arm, glowing translucent red with tiny blue veins, magically illuminated by a special light they brought in, and the fluorescent glow of the fish tank against the wall, meant to be calming, soothing, relaxing, distracting.
I want to smash my head right through that tank and scream. I want to crawl out of my skin. I want this to stop. Rewind. I want them to leave my baby alone. I ask again if the IV is really necessary right now, and everyone looks at me, some sadly smiling. By now it’s all been explained to us more than a few times by more than a few doctors. Your son has leukemia. He needs to start chemo today. First step is the IV. We need to get started. There is no choice.
I recoil at the thought. I don’t want them to put that poison inside my beautiful, perfect, innocent baby boy. I am sick with worry about the effects the chemo will have on his young body and his developing brain, the effect this experience will have on his life. What had been his life. What his life is supposed to be. What his life was supposed to have been. I am struck with the realization that life is forever changing right now. Now. That they are stealing my son from me in order to save him and he will never be the same and there’s absolutely nothing I can do about it. There is no choice.
Ben is once again struggling against the looming IV needle and a team of nurses, doctors and techs are holding him down. My jaw is clenched and my blood is racing, heart deflating. Another poke. Another scream. Another collapse.
“No more, mama,” Ben says.
I need this to stop. I am yelling at the doctors and nurses to just get someone, an expert, someone who can successfully access my baby’s veins and just get this done.
I need this to stop. Can’t somebody just do this?
I have lost track of time in that small, dark room. Ben has stopped struggling. He is limp, damp, staring deeply into my eyes with his big baby blues. His strawberry blond hair clings to his forehead. I cling to his small, chubby hand. My mouth is so dry. I want to say I am sorry to him but I cannot speak. My tongue sticks to the roof of my mouth. I am desiccated.
A short while later the doctors and nurses finally get the IV in, and they cheer, happy and triumphant, smiling at us, as if we feel the exact same way.
Author note: Ben will be twelve. He is almost as tall as me, is sweet as sugar, laughs the loudest laugh and still has the most beautiful blue eyes in the world. Ben was diagnosed with acute lymphoblastic leukemia over 9 years ago. He was treated for 3 years and 2 months, and is considered cured. I know that childhood cancer is one of those dark fears nobody really wants to think about. I understand you. This essay was written as an invitation to take just a peek. Maybe understand those of us who have gone through it. And those who still are fighting the fight.
About the Author: Abbe Walter lives with her husband and four children in Connecticut, where she also works and writes. She is a practicing clinical psychologist who has been published in various scientific journals. This essay is her first non-academic publication.
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