I became the "cancer mom" after my daughter's leukemia diagnosis in August 2017—and learned an invaluable lesson about finding joy.

By Jessica Phillips Lorenz
September 26, 2018
I Am the Cancer Mom in Your Social Media Feed—and Here’s What I Want You to Know
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My daughter was diagnosed with Burkitt’s Lymphoma/Leukemia in August 2017 when she was 6-years-old, and that’s when I became the cancer mom. You know her: the one with the profile picture on social media that's framed with gold ribbons—the color of Childhood Cancer Awareness. The mom who’s always researching clinical trials and sharing articles about new treatments such as CAR-T. The mom who’s excited about “natural killer cells” and what they can do. The mom who lives in the hospital and posts hearts and writes “hugs” and sends “white light” on many of her friends’ pages to support their sick kids. The mom who shares upsetting facts about pediatric cancer—such as the brutal truth—that only 4% percent of federal funds dedicated to cancer research go to pediatric cancer.

I was not always the cancer mom. I was many things including a pun-maker, stealthy eavesdropper, and traffic yeller. I specialized in being a preparer and consumer of foods, an educator, a student, a yogi, a complainer, a worrier, an occasional performer, a financial stability seeker, a comfort footwear-wearer, and yes…I happened to have a wonderful hubs and a couple adorable kids.

There was not one singular thing that defined me. Instead, all these components came together to etch out my personhood. See also my race, gender, sexual identity, age, and socio-economic status. But in real life, I might have been best described as an under-her-breath jokester, a customer service navigator, and a kisser of boo boos. Wouldn’t these be better categories on the next census? They say more about who we are, no?

For most people I knew before August 2017, I was probably the only cancer mom in their social sphere. Before I became a cancer mom, I knew only one cancer mom—a deal old pal from high school who lost her delicious 3-year-old son to brain cancer several years ago. But since my daughter’s diagnosis, I know more cancer moms than I wish existed.  Some I’ve met in person, because I am a social extravert who longs to connect even in the hospital.  Others, I’ve met through my social media social-life, which has become my actual social life. When you spend months in the hospital there's only so many times you can handle hearing the Puppy Dog Pals theme song.

Over the past year I have joined multiple Facebook groups, many of which go through extreme vetting processes before you are invited to join. I was wary of giving too much info in those early days, worried I wasn’t protecting my child’s health information.  Later I learned the vetting is in place to prevent those who prey on this community—my community. (So help me if I ever meet the person in Australia who stole my daughter’s photo and identity to create a fake Go Fund Me page in hopes of profiting from my family’s most desperate hour.)

At first, I didn’t want to connect with anyone else who had a child with cancer. I didn’t want to hear something that would take me further down a path of fear and worry. Perhaps it was denial, my not wanting to check the box on the census that said "cancer mom." But whether I liked it or not the box had checked me. 

When you have a child with cancer, caring for your child is all you do. You are her teacher, a friend, a playmate, and a short order cook. You are advocating for her, explaining to medical teams what you think is hurting and when it started and how often it happens. You are learning about medicines that you had never heard of until they are being pumped into your baby. You are catching puke. You are communicating to other family members and friends what the latest developments are. You may also be parenting another child or two or five. You may be trying to work remotely. Or speaking to a social worker on ways to connect with foundations whose generosity may keep you from losing your house. You are probably pretending and then, eventually, believing that this is normal-ish, in order to soothe your child and keep her fears at bay.

What does it feel like to be a cancer mom, to watch your daughter endure months of difficult and painful cancer treatment? Remember when you took your baby to get their first round of vaccines and you cried because you knew it hurt her and she couldn’t understand why you would do that to her but it was for her own good? It’s like that but for months or years on end and your child begs you to make them stop and screams that she is scared and it hurts and instead of it being for her own good it is with desperate hope of her having a chance to live.

Yet, despite all of the pain and fear and unknowns in my life right now, I've discovered a sort of gift: opportunities for true authentic joy. Sometimes it’s as subtle as listening to my daughter’s giggle in the darkness of a matinee screening of Hotel Transylvania 3. Instead of allowing myself to think “Why did this happen to her? Is there cancer growing inside her body now? What if this is the last time we go to the movies? What if what if what if?!" Instead, I wrangle my thoughts and try to focus on the sound of her amazing laugh. “My kid has the best laugh.”

Other times the joy I encounter is less subtle. We were “lucky” enough to attend a weekend for oncology families at Paul Newman’s “The Hole in the Wall Gang Camp.” The moment we walked into the dining hall—a huge atrium with arched wooden beams and giant colorful totems and huge flags painted by kids—it was as if my pre-cancer mom self started calling to my cancer mom self to “Come check this out!” I looked around at all these beautiful people, some of whose kids will die. Statistically, that is the truth. One in five children with cancer will not survive. When you are in a room with 30 families, that truth hums through the air. 

Despite the grim circumstances that brought us all together, however, the mood was light—everyone there was doing a dance about looking good in a fanny pack! This was joy. It wasn't what I have always expected joy to be—an effortless gift of happiness. Nope. This joy was more like running a race that felt awful the entire time but you did it anyway. Everyone there was doing it anyway. Kids in wheelchairs, kids with moon-like faces inflated with steroids and chemo, kids who look like your kids and the parents who love them all dancing and singing like goofballs. The. Best.

And as I looked around, my cheeks wet with tears I didn’t realize were falling and see my people, my fellow cancer moms and dads; I recognized something in our faces. We were like refugees trying to carry our children over the borders into some safe land. I used to see those images on the news…families packed into boats trying to escape Syria…or Yemen…or some other war-torn land and I would wonder how those parents did what they did. I don’t wonder that anymore. I know you do whatever you have to when you are pressed against the glass. If that means you have to kick it through then you kick as hard as you can. Or if it means you do a kick line in a room full of strangers who are laughing in spite of their agony, well you damn well do that too.