It begins with a magnolia leaf—smooth, shiny, and deep green.

Hazel holds it out to me, her face crinkled in concern. She is five years old. Three and a half feet tall, she is so slight that a stiff wind could blow her away like dandelion fluff. Her frizzy blonde hair stands out around her head in a perpetual halo, doing nothing to dispel this perception. She is leaner and tanner than her older sister, Evaline, who inherited my rounded build and pale complexion. It is an unseasonably warm day in early November. The girls have been outside playing for hours.

“Is it poisonous?” she asks. 

I am kneeling in the dirt of our flower bed with a spade in my hand. Standing up, I wipe my dirt-covered hands on the back of my shorts, examine the leaf, and shrug.

“I don’t think so. Why?”

“I took a bite and spit it out, and now my throat feels funny,” Hazel tells me.

We consult Google. Google agrees that magnolias are not toxic. I think the subject is closed. Moments later, Hazels returns to me and asks if I am sure. She then reminds me that in Girl Scouts, they are taught to consult at least two reliable sources on possible poisons. We check several reputable websites, and all are in agreement. Magnolias are harmless. 

***

Days later, Hazel and Evaline are playing together. It is a weekend, and we are relaxing in the basement rec room.They are clustered at the repurposed dining table that is covered in thousands of Legos.  Jim and I sit on the leather couch. He is drinking a beer, some local, trendy IPA, and I am reading a book with my feet in his lap. Hazel cough-gags and touches her throat. Always on alert for choking, anaphylaxis, trauma—something, anything—that would signify a child is injured or ill, I jump up. 

“What’s wrong?” I ask, resting my hands on her shoulders and peering into her face. 

“My throat feels weird. Maybe I swallowed a Lego?” she says it as a question. 

“You did swallow a Lego or you might have swallowed a Lego?” 

Hazel shakes her head and purses her lips, “I don’t know. I think I did.” 

Again, she cough-gags, and rubs at her throat just above her sternum. 

“It feels weird, like there is something stuck,” she explains while rubbing the area in small, fraught circles. 

“How likely is it that you swallowed a Lego?” I ask. The girls are prone to using their mouths to pry apart the tiny blocks. 

She shrugs, and I sigh. A late Saturday afternoon trip to the emergency room was not on my agenda for the day. But if there is something stuck in her throat, it’s better to know now. We start preparing to head to the ER. Jim and I discuss who will do what. He’ll stay with Evaline and Gemma, our one year old. I’ll take Hazel in and call with updates. 

Suddenly, Hazel is at my side. 

“I’m fine,” she says, “it’s gone. I don’t really think I swallowed a Lego.” 

I watch her for the rest of the afternoon and evening, and the cough gag doesn’t return. She does seem perfectly normal.

***

Over the next week, her behavior becomes increasingly strange. She worries about germs and poisons. She has always been more fastidious than Evaline, two years her senior, but nothing to explain this sudden obsessiveness. Food that touches the tabletop is no longer edible. Her Nana, whom she adores, cannot hug her after touching Evaline’s rock collection. The white film left behind on a clean plate in the dishwasher leads to a long, serious discussion about mold. In the end, Hazel still refuses to eat from the dish. I have a bad feeling about something that I cannot name.

Lying in bed, late into the evening, I tell Jim, “something is wrong with Hazel.” 

He is warm and solid and reassuring besides me. Nearing sleep, he suggests a visit to the pediatrician. 

I Google. I reach out to the social media world. I decide that Hazel has PANDAS, a controversial condition associated with recent strep infection. I schedule an appointment with her pediatrician. Hazel otherwise seems fine. She isn’t lethargic. No weight loss, and her appetite hasn’t changed. She is her usual, headstrong self. 

The pediatrician, a tiny, kind Jewish woman with a cap of tight gray curls, listens to my history and nods along. Hazel plays unconcernedly while we talk. Her physical exam was normal other than a lymph node in her neck that is mildly enlarged. 

“Have you heard of PANDAS?” Dr Cohen inquires. 

Relief floods through me. I nod vigorously, “That’s my thought too.” 

“Nevertheless,” she continues, “I think it’s prudent to check some bloodwork. You can head to the lab from here.” 

Lab work and a short course of harmless antibiotics, and I will have my normal five year old restored to me. No more obsessing about invisible molds and dirt. We leave and go to the lab, where Hazel astounds me by sitting absolutely still while the phlebotomist gathers three tubes of blood from the vein in her elbow. It is the Monday before Thanksgiving.

I hear nothing on Tuesday. On Wednesday, since Thanksgiving looms, I call and leave a message with the nurse. She reassures me in a brisk voice that she will send the lab work to the on-call doctor for review.

We are at my in-laws preparing for the festivities. The house is a five bedroom split level, nestled in the Appalachian mountains. Warm light fills the windows, and the smell of roast turkey fills the house. I talk to Sam, my MD brother-in-law, and Walt, my MD father-in-law, both specialized in pediatrics. They shrug and agree with me that PANDAS seems most likely, and if not, then it is probably nothing to fret over—maybe a vagary of childhood. Still, there is a niggling in my gut. 

The nurse calls back and gives me the cheerful news that the bloodwork looks great. Oddly, the strep testing was all negative. It makes PANDAS very unlikely. I am instructed to finish the antibiotics anyway and recheck if Hazel isn’t improving. Perhaps referral to a counselor would be in her best interest.

***

Sunday, I am sleeping late, buried in a warm nest of blankets, while Jim cares for the girls. It is 10:30am. My cell rings. It is a number I don’t recognize, but it has called three times, and there is a missed text message. I am too groggy to be alarmed but aware enough to realize I should answer.

“Hello?” I ask in a sleep-furred voice..

“Hi, Catherine, it’s Dr Cohen. Sorry to call you on a weekend, but I’m calling about Hazel’s bloodwork.” 

I am confused. Why is she personally calling, on a Sunday, just to reassure me that my daughter is healthy? 

“Overall, her blood work was normal,” she begins, “but there was an abnormality. It wasn’t highlighted and didn’t really stand out on the report.” 

My blood freezes. 

“There are 12% “other” cells circulating in her bloodstream,” she continued. “They are lymphoblasts.”

My heart. I cannot breathe. I am drowning in a room full of air. 

“Are you telling me that she has leukemia?” I manage to gasp out.

“I’m so sorry,” her voice strained, “but I want you to take her to the hospital today. I’m hoping this is just a mix-up, some lab error. We need to recheck it to be sure.” 

The conversation goes on, as I stammer out questions while dragging Jim into the bedroom with me. I close the door in the faces of Evaline and Hazel. Both are wide-eyed at my obvious distress. I hang up the phone and tell Jim, “they think Hazel has leukemia.”

He is like a balloon suddenly emptied of air. His shoulders drop and his whole body sags. 

***

I didn’t understand independent probability when I was young. I assumed if lightning struck me, then the chances of it ever happening again were much lower. Similarly, I assumed that if one of my children ever died that the others would be safe—or if not safe then safer. One day, my mathematician husband explained independent probability to me. The probability of one event occurring in no way affects the probability of the other event happening. It is true. Mathematics doesn’t lie. My children were not safe.

***

We skip the crowded ER, filled with restless people and are admitted straight to the third floor. Riding the elevator fills me with memory. I carried my dead son down on this very car— to walk out into the icy January air and take him home to bury him. His face was quiet with rosebud lips and framed by wavy auburn hair. He was only five months old. James. Our son. 

The electronic doors part and admit us to a long hallway, paved in linoleum. The nurse’s station is to the left and patient rooms are to the right. We walk the length of the pediatric wing, passing open doors, where children attached to oxygen watch Sponge Bob on blinking tablets and infants mewl miserably in cribs with bars like prison. At the end is our room—309.  It is through another set of heavy doors in a perpendicular hall. We are not yet aware that this is where they put the pediatric cancer patients.

There is another nurse’s station. An oncologist is waiting. She is young with coke-bottle glasses and a warm smile. She sits hunched over a computer work station occasionally tapping the keys. I wonder what it is like, telling parents that their child has cancer, that two years of intensive chemotherapy will be needed—that the statistics are amazing for childhood leukemia but that amazing still means up to 10% will die. 

She sits knee to knee with us. I find it hard to imagine that she has been out of residency for more than a year or two. Her optimism is not contagious. 

The bloodwork findings are confusing, she explains. There is no sky high white blood cell count. Hazel’s red blood cells are just a little low, but that isn’t abnormal in young children. She has normal platelets. The blasts are still there, but the numbers are lower than almost a week prior. We hear “it’s not leukemia” and then, “it’s probably leukemia.” Mono is thrown out as a possibility. Only a bone marrow biopsy will tell us.

So we find ourselves the next morning tucking a white sheet around tiny Hazel’s shoulders, kissing her forehead, and leaving her in the hands of the pediatric intensivist. Jim rests a hand on her forehead like a benediction. The doctors will do a bedside bone marrow biopsy. The preliminary results will only take a few hours. 

In the hallway, bathed in fluorescent lights and the chemical odor of sickness, we wait. Jim makes horrible jokes to lighten the mood. “Cancer’s my favorite!” and “Gee, I really hope it’s the good kind of cancer!” Occasionally, one of us exclaims out of nowhere, “but she wasn’t even sick!” The unspoken between us—two medically fragile kids. What are the odds? 

***

When we are readmitted to the room, Hazel is sleeping. She lies on her side, one hand curled under her head, eyelashes resting against her pale cheeks. She breathes slowly and evenly. 

The bone marrow biopsy doesn’t lie. The oncologist comes to tell us at 6pm. Her face is serious. I scrabble desperately for an explanation, any explanation, that doesn’t involve cancer. Hazel is down the hall, playing in the children’s room. I sit on the bed, and the tears drip hot and scalding down my face. I cry silently. I want to tell her that she must promise me that Hazel can be saved. There can be no doubt. But I know she can’t do that and so I bite back the words.

Jim doesn’t cry. He just nods over and over as she talks. Leukemia. Acute lymphoblastic. High cure rate. There’s a trial going on and we need to sign papers for permission to place Hazel in it. The next few days will be intense. She will be anesthetized in the morning and have a port placed. This will provide the oncologists with access to her bloodstream at any time. It will prevent repeated needle sticks to collect samples and administer chemotherapy.

And chemotherapy. It will last two years and a few months. My mind spins. Two years?

It’s all too much to absorb at once. I excuse myself to the hallway and find a window. Slumping against the glass, I slide to the floor.  

Published by Catherine Ashe

I am a mother to four children, one gone before me. I write to release the pain.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: