My fifteen year old had a rare form of cancer when she was four. The treatment caused stage three kidney disease. I don’t think about her kidneys often. They don’t affect her daily life. She’s in good physical health, not just for a kid who had cancer, but for a fifteen-year-old. She takes a dose of calcium daily and occasionally needs her blood pressure monitored. But she’s athletic and able to keep up with her friends on the soccer and lacrosse field. She’s rarely sick during the school year.
I don’t focus on the parts of Emily’s body that are damaged. There are many. I’ve raised her to believe that she has no limitations and that she’s able to do anything that her peers can. My worst fear was for Emily to be labeled “the kid who had cancer.” I didn’t want her to internalize her disease or to identify herself as “sick.” I let her do everything. Even things that scared me, like learn how to ride a bike and swing on a tree tire. Normal kid things but ones with bigger consequences for Emily. Yet it didn’t matter. I was willing to risk her physical health to boost her emotional health. I’ve always put her emotional health first.
Ten years post-treatment, I continue to let Emily do everything. She plays sports, has a job, and will drive soon. There are times that I want to say “no” but I don’t. I get nervous sending her to the beach with her friends because I’m not there to make sure she drinks enough water (kidneys need hydration) and wears a hat (she has sparse hair on the top of her head). But I let her go because she needs to learn how to take care of her body when she’s with people who don’t need to think about theirs. She gains independence and I get to pick and choose the best conditions for her to do it.
It’s hard (read: impossible) to know how Emily’s body would react if she were to get COVID. She’s young, which is good, right? She might be asymptomatic. She could get the sniffles or a cough. She could need a few days of rest. If she didn’t have kidney disease, I’d send her to school in-person and cross my fingers.
But Emily doesn’t have a “normal” teenage body. She might not react well if she contracted COVID. She could spike a high fever, which would send her kidneys into overdrive and cause her to be severely dehydrated, sparking additional complications. Her other organs might cry out for help and she’d need to be hospitalized. There are red flags all over Emily’s medical records. Doctors don’t mess around with kids who’ve had cancer — they go to the hospital. Maybe she’d be put in the ICU. I’ve been in the ICU with Emily. It was awful. I never want to do it again. Ever.
The decision of whether to send Emily to school in-person or online seems a no brainer. Online is safe. In-person is risky. The school can’t police mask wearing and social distancing. I’ve been a high school teacher for twenty years and teenagers love to touch each other. They love to share things. They celebrate breaking the rules. Teenagers who attend school in-person will be exposed. There are irresponsible parents who will send their sick kids. There are kids who will be asymptomatic. One of them could be a friend she eats lunch with. The question isn’t what if Emily is exposed. She will be. The question is how will her body react if it is exposed. I wish I knew. It would make the decision a lot easier.
I’ve made hard decisions on Emily’s behalf before. Lots of them. I decided to have Emily participate in a trial that randomized her for two back-to-back stem cell transplants. She almost died during each one. But she lived. I decided to allow NG tubes to be placed to help her gain weight. I decided to agree on leg braces so she wouldn’t walk on her tippy toes for the rest of her life. I decided to allow drugs that would kill the cancer but would alter her physical body permanently. I decided to send Emily to Kindergarten, despite the school’s strong stance that she repeat preschool because of her small size, her medical needs, and her lack of readiness. And I made the decision to have Emily wear an estradiol patch to boost estrogen because her body doesn’t make any on its own. Hard decisions are part of raising a daughter who has been treated for cancer with harsh toxins. I’m familiar with the process. I just never get used to it.
Why would I even consider sending Emily to school in-person? Surely only a crazy mother would do such a thing. Because I have cancer mom guilt. It’s a real thing. Emily missed out on two years of her life. She spent those years isolated in the hospital asking if friends and family could visit her. She was immunocompromised and unable to see anyone other than her immediate family, nurses, and doctors. She missed out on school, parties, and playdates. I watched my feisty four year old become withdrawn and not care about the things she loved. Like puppies and Care Bears. I vowed she would never miss out on anything again. Once she was better, I said “yes” to everything. I just wasn’t able to foresee a pandemic hitting during her teenage years.
When COVID hit last March, Emily woke up at seven, grabbed breakfast, and headed into the basement where she made a station for herself complete with her laptop, snacks, pens, paper, and big binders. But after about six weeks, she stopped going to the basement. She started going to bed late and waking up late. School was a bother. And Emily loves school. “Ummm, it’s not school,” she said. “It’s basically all the things I don’t like about school.” She threw herself in Grey’s Anatomy, Dance Moms, and Keeping Up with the Kardashians. From the moment she opened her eyes until the moment she closed her eyes, she was on her phone. All. Day. Long.
I can’t imagine keeping her home until January. It would make living with Emily very difficult. More difficult than usual. But my father makes me paranoid with all of the different scenarios that Emily could encounter at school. “Can the school be 100% positive that they can protect her from exposure?” No, dad. They can’t. “Then that’s your answer.” He makes it seem so straightforward.
But there’s a glitch to keeping Emily home. Emily has an older sister who’s a senior in high school this year. Isabelle missed her junior prom and awards ceremony this past spring. She’s painfully aware that her field hockey season will be canceled and that she can’t visit colleges to prepare. To salvage any part of her senior year, she’s ready for school in-person. Seeing her friends at school might be the thing that keeps her spirits up and her grades strong. Isabelle has no medical issues and I’ve been careful not to impose Emily’s needs on her. (More cancer mom guilt — this one with the sibling of the sick kid.) But I can’t send Isabelle to school and not send Emily. That’s not fair. And I can’t make Isabelle stay home because of Emily’s health. That’s not fair. Nothing about COVID is fair.
I’ve thought of letting Emily decide whether or not she should go back to school in-person. If I let her, she’d go. She’s been raised to say “yes, I can.” I love her bravery. Even when it scares me. I don’t want her to miss any more minutes of her life isolated and sad. Cancer stole years. COVID has stolen months. I know it’s better to be sad at home and alive than to get COVID and be dead. Trust me, I know. But try convincing a fifteen-year-old. And her seventeen-year-old sister who thinks that Emily’s cancer issues get old sometimes.
I still don’t know if I’ll send Emily to school or keep her home. I keep hoping that the pandemic will suddenly go away by Emily’s first day and I won’t have to make a decision. I know it’s unlikely but it pacifies my mind enough for me to be able to sleep. Parents with healthy kids can take risks. They can weigh the odds and take a chance. I didn’t keep Emily alive until her sophomore year of high school to watch her get sick with something that could have been avoided. Decisions are hard. Even the bad ones.