How it Started: My child’s brain tumor diagnosis

By Suzanne Leigh

 

In an undistinguished building set in an area dotted with hotels, many rooms have en-suite bathrooms with walk-in showers. There is a sturdy armchair that can be coaxed into an extra bed and a TV mounted high on pale walls. Missing are the more subtle accouterments favored by hotels: the room-service menu, the boxed slivers of soap, the full-length mirror under a muted light.

The “guests” on the sixth floor are not travelers, but pediatric patients and their families. Not so long ago, hospitals were full of healthy kids recovering from broken limbs or angry tonsils. Today, most patients staying beyond a couple of days have life-threatening disorders: cancers, brain tumors, lymphomas. They are pale, dull-eyed and lethargic; some are bald. They walk gingerly, attached to wobbly IV poles.

 

My daughter is one of those patients.

 

It had started with a visit to an optometrist in a suburban shopping mall. Natasha, 7, was having her eyes checked. “Did you want me to dilate her pupils?” the optometrist asked. It was getting late, she hadn’t done her homework yet, my younger daughter was getting cantankerous, and then there was the perennial question of dinner. “Okay,” I said wearily.

 

Ten minutes later, I was urged to leave my children “with my assistant, please, and step into my office.” The optometrist flicked on his computer with a flourish. “This,” he said, pointing to a image of my daughter’s swollen optic nerve, “is papilledema.”

 

The underlying cause: a brain tumor. My precious firstborn has a brain tumor. I will do anything, anything, to make her well. But there is so little I can do. So I pace. Up and down, up and down in the lonely hospital hallways.

 

Across from our room is a kitchen, its refrigerator stuffed with half-eaten dinners and its cracked coffeepot exuding the harsh aroma of liquid that should have been poured down the drain hours ago. A mother catches my eye as she pours tea. Her daughter has cancer, she says. We look at each other, two rumpled figures with tired eyes, but then I look away. Cordial conversation is beyond me, and besides, I don’t want to join her club.

 

In the lounge, a family has taken up residence, catnapping on the couches and eating sandwiches. The air is thick with emotion. A grandmother sobs on a younger man’s shoulder.

“Let me know if you need anything,” says a nurse. She has a bright, optimistic face. I follow her back to the nurse’s station, which pulsates with industry and vigor. Late at night the pace slows, and I catch snatches of conversations: references to “my boyfriend,” a bar on the hip side of town, a halter-neck top and a debate on the right skin-care regimen.

 

In the early hours of the morning, a resident performs a “neuro check.” He awakens Natasha, who had been sleeping next to me, a heap of limbs and tangle of dark blond hair. “What’s your name?” “How old are you?” “What year is it?” he asks her. Natasha, age 7, 2008, she responds.

 

Seven, only seven, I think to myself as the resident, satisfied, goes on to the next patient.

In the morning, my husband and I meet our daughter’s neurosurgeon. He is sincere, quietly confident and compassionate, but we are wretched and desperate. Sitting in the waiting area for the nine hours that he works to remove the mass in Natasha’s brain, we want to vomit, cry, die, kill the moronic hospital store assistant who tells us to “have a great day.” Our friends stop by the hospital. They hug us and ply us with food, drinks, prayers and pleas for updates. An aunt calls from overseas. She recalls seeing me the day I was born. I don’t understand what prompted that recollection, but it seems somehow kind and poignant.

 

By the time the operation is completed, our entourage is the last group standing. We gasp when we catch sight of our neurosurgeon approaching. He has removed the entire tumor, he says. She did very well. They’re bringing her to the intensive care unit, and we can go up in a few minutes.

We shake hands, and he disappears. I can’t wait a few minutes. I run to the ICU, to the bed where Natasha lies naked, arms flailing. She was born in the same hospital; now I am witnessing an extraordinary rebirth.

 

Natasha’s head is bandaged, her face is swollen, and her eyes are open. I brush past the melee of nurses and residents and stroke stray strands of hair, kiss her hot cheeks and tell her I love her. “Is it over, Mama?” she asks. “Yes, all over!” I say.

 

Hours later, while Natasha is sleeping and after my husband has gone home, I return to the hospital kitchen to reappraise the uneaten sandwiches given to us that morning. The mother from last night is there, once again making tea. “I met you yesterday,” she says. “My daughter has cancer. How is your little girl?”

 

I know that she is hungry to talk, to share her fierce and lonely battle.

“She had a brain tumor,” I say, as a flicker of empathy crosses her face. “She’s doing well,” I add. “How is your daughter doing?”

 

Natasha

 

This article was originally published in the Washington Post. It can be found on the author’s blog:

www.themourningafternatasha.wordpress.com