A Day in the Life: My Child Has Cancer

My six-year-old son Lou was almost four years cancer-free. But this past April, three tiny dots on his routine scans took my breath away…

“We have a problem,” our oncologist said, her words both new and familiar. I was a Cancer Mom again, this time with a child whose rare form of brain cancer had spread to his spine. Despite our shock, my husband Ian and I went into Go-Mode: We did this once, we’ll do it again. But Lou and his identical twin brother, West, weren’t babies anymore. They had questions I struggled to answer, like “Why is this happening to me, and not West?”

Emotions aside, the logistics were overwhelming. In order for Lou to safely receive the mostly in-patient treatment, we had to split our family apart, half our unit living in Manhattan, and half of us two hours north. There are millions of Cancer Moms like me, split in two, living an alternate reality behind closed hospital doors and many of us feel pressure to put our fight face forward. But what follows is a day in the life, my life, no filter.

A Day in the Life: My Child Has Cancer

5:00 a.m.

It’s been one of those nights. No puking or fevers, but I keep jumping over Lou to silence the infusion pump and press the call button. “How can I help you?” the voice cuts through the dark. “We’re beeping again!” Silence. I assume How Can I Help You? is off trying to find Claudia, the nurse, but I hate being left hanging. I wish that How Can I Help You? would just materialize in my room, maybe as a caftaned therapist in a cocoon chair. “How can I help you?” she’d ask, pencil to pad. “I don’t know. My son has cancer again. How can you help me?”

7:30 a.m.

Lou’s still asleep, so I carefully crawl out of bed, brushing the last of his blonde hairs off my T-shirt. I don’t want to miss FaceTime with West at home, especially since today is West’s first day of school. But Lou yells, “Mommy, pee-pee!” as my phone rings and I race both him and the pump he’s attached to into the bathroom. “I need a bucket!” he panics, holding his mouth. I slide the pink bucket over with my foot as I reach for the call button, but he’s already throwing up. Nurse Claudia resurfaces, motioning for me to step aside. I’ve missed my husband Ian’s call. He sends a picture of West wearing a new backpack and a pair of striped knee socks. “Knee socks?” I text. “They’re his new thing,” Ian writes back. Lou is laughing with Claudia. I don’t know what hurts more. Claudia saving the day or learning via text that knee socks are West’s “new thing.”

A Day in the Life: My Child Has Cancer

9:00 a.m.

I make sure I’m showered, dressed, with red lipstick before joining Lou’s oncology team in the hall for daily rounds. It’s my way of dressing for the morning I want to be having, as opposed to facing the resident who always starts rounds with, “Lou is our six-year-old boy with recurrent metastatic choroid plexus carcinoma.” His words are like pie to my face, but I just keep smiling as they go through plans for the day. Lou will be getting chemo. I’m to count how many Cheerios he can stomach; they may have to hang a nutrition IV. After, the oncology fellow asks if I’m a yoga teacher. “You’re just so calm and composed,” she says, and I bask in her approval. The disheveled mom from 409 walks by, shooting me a death stare. I’m sure my smiles and lipstick annoy her. But deep down I wish I, too, could just wander the halls, pissed off, in last night’s pajamas.

11:00 p.m.

It’s time to change Lou’s Mediport dressing. I pray it doesn’t take three nurses and my sitting on him like it did last week. “You got this!” I tell him, but I feel like I’m leaving my body. Pamela and Jodi hold him down, while Maureen starts peeling the plastic bandage. I look out the window, reassuring Lou from afar. Our room faces another hospital building, specifically a Labor and Delivery ward. I see a new mother nursing her baby, and it dawns on me that I have no memory of nursing my babies. Lou was diagnosed at one year old. We spent eight months in treatment, and Cancer quickly erased everything that happened Before. Lou screams as Maureen inserts the needle into his chest. I hold onto the bed, as if by holding on I can prevent the last four years – pre-school, Disney World, all of it – from disappearing, too.

1:00 p.m.

My mother comes to play “Don’t Break the Ice” with Lou so I can step outside for some air. The nurse Maureen stops me as I’m putting my coat on. “Mom, can you sign for the Methotrexate?” I look over at my mom, only to realize I’m the mom that Maureen’s speaking to. I sign at the dotted line, granting permission for something that sounds like broken glass to be administered to my son. “Oh, and Mom,” she says, “you can’t cuddle him once we hang the bag.” My face drops. “But we sleep together,” I say. But she explains: “It secretes through his skin. You’ll have to wait until it’s all flushed out.” Across the way, the mother in the window is staring at me, at us. She holds her baby close. I’m the mom she’s probably praying she’ll never be.

A Day in the Life: My Child Has Cancer

3:00 p.m.

It takes me two hours to leave the hospital. This time I’m the one asking, “How can I help you?” as I’m stopped by the social worker. Then the art therapist. The music therapist. The nutritionist. The finance lady. And the resident (“How many Cheerios?”). The longer it takes me to leave, the more I feel like I am coming down with what can only be described as Stockholm Syndrome for Cancer Moms. I have to summon up superpowers to Leave. The. Building. But outside is a different kingdom. I get caught in an avalanche of mothers and children with oversized backpacks. The moms are scolding their kids, the kids are having tantrums. I feel like I’m lost in a foreign country, listening to a language I no longer understand. Minecraft? Screen time? All I can think about is West in his knee socks, getting out of school, without me, without Lou. I burst into tears on First Avenue.

6:00 p.m.

The Methotrexate has been hung. I get into bed with Lou, and I hold him, even though I’m not supposed to. We’re watching Sing! for the second time. It’s our favorite part, when the mama pig dances to “Bamboleo.” The resident pokes in his head. “Six Cheerios,” I tell him. “We’ll have to hang nutrition then,” he says. Lou not eating feels like an epic Mom Fail, as does my forgetting to text Ian about the lasagna in the freezer at home. Then my dinner arrives. “Ugh, that smell!” Lou complains, covering his nose. I go to eat my salmon and mashed potatoes by the door. And that’s when I hear the woman wailing. A large group of nurses, doctors, and the chaplain have gathered outside 408, next door. They’re looking at their feet. The mother in 409 comes out, too, and we look at each other, realizing what’s happened in the room between us. The nurse Maureen nudges me back into my room. In my shock, I mumble something about frozen lasagna, as “Bamboleo” and Lou’s laughter drown out the unspeakable.

7:30 p.m.

Lou’s mad because Maureen and I are giving him an Aveeno bath, to protect his skin from the Methotrexate. “You’re washing me with cereal?” he yells, the milky oats dripping off his tiny, bald body. I don’t understand how Maureen can be business as usual after what’s happened next door. After the bath, Lou and I FaceTime with Ian and West. “I got to sing in Spanish!” West tells us. “I had a cereal bath!” Lou tells them, and West looks totally confused. “How was your day?” Ian asks. I look at the face I’ve barely seen for the past five months, and then at my own white, shaken face. I see our country kitchen, West’s backpack, and my plants on the window sill. I don’t know what to say. I can’t stop thinking about the mother who lost her child.

A Day in the Life: My Child Has Cancer

8:00 p.m.

It’s finally bedtime. I’m panicking as I have to break it to Lou that we can’t sleep together. Or can we? “Let’s make a boat!” I suggest. But I can’t figure out how to unlock the bed so I press the call button. After some maneuvering, I move what feels like a mountain up against the sofa by the window. “There,” I say, marveling at my Mom Hack. With the covers on, and our socked toes touching from opposite sides, it’s like one big life boat, complete with puke buckets. “This is cozy!” Lou says, yawning, and I agree. I begin to read from The BFG when “How can I help you?” finally gets back to us. “We’re good!” I yell back. “Are you sure?” she asks. I look at Lou, his eyes growing heavy. Then out the window, where the mother and baby have fallen asleep in their chair. An exhausted calm falls over me. “Yes,” I say. And for right now at least, I really mean it. 

A Day in the Life: My Child Has Cancer

You can follow Lou’s progress on Alexa’s instagram chronicles. Thank you, Alexa! Sending you and your family so much love.

P.S. Home as a haven, and how to help a child after a bad day.

(All photos courtesy of Alexa Wilding’s instagram.)