Two years ago, I received the worst news of my life: my daughter, Johanna, was diagnosed with stage four cancer.
Seventeen and just starting her senior year of high school at the time, Johanna was visiting colleges with her sister Max, my spouse Maggie, and me when we noticed how easily fatigued Johanna was walking around campuses. She chalked it up to general back pain for which she had recently been seeing a physical therapist, but she wasn’t improving and our concern was growing.
In three short weeks we stumbled through a doctor’s recommendation to go to the hospital, to tests that didn’t seem too concerning, to the daunting possibility of cancer, to the identification of a malignant lump in her right foot (painless and invisible to the eye), to a name for the cancer (rhabdomyosarcoma). Next came the realization that it metastasized throughout her body and in her bones in particular, and then the diagnosis that she had a less than a five percent chance to live to see her 23rd birthday.
Like most people, I had some understanding of what cancer could mean. I had extended relatives that died from cancer complications but had lived long lives first. I knew colleagues through work who’d had cancer, but I saw little first-hand. I’d seen plenty of media representations of cancer (the closest to reality being the film 50/50), but a two-hour movie could not truly accurately portray the experience.
The doctors told us it wasn’t hereditary or caused by anything specific in her environment, but only a random genetic mutation, and since my family are all secular humanists, there wasn’t anybody or anything to blame.
After this diagnosis, we began doing what we could to help Johanna begin her treatment with high hopes and no understanding of how bad chemotherapy and the associated issues she’d face could be. While we expected cancer and the treatments to be a struggle, we had no idea the extent of it.
I don’t want to oversell this one iota, and there’s no need to, since no words can convey how bad this was. A few short examples give a sliver of the experience:
• From the early days at the hospital, Johanna struggled with severe pain in her back because the cancer had eaten away at her spine so much that the vertebrae were beginning to splinter and crush each other. I know from having broken a couple of ribs once that such fractures can be difficult to endure, but endure she did, only asking about the possibility of a more comfortable mattress, which wasn’t an available accommodation.
• The many nights I spent at the hospital with her, listening to her tortured breathing for any signs that it might stop, were terrifying for me but must have been much harder for her. I almost welcomed the interruptions from the nurses every couple of hours to check her vitals, since at least I knew that meant she wasn’t in immediate danger.
• Early in her treatment, doctors performed minor surgery to insert a port into her chest, something that’s needed for some types of chemotherapy which might otherwise burn the body if not inserted directly into a large enough vein. That process went awry as the port site didn’t bond correctly after surgery, and I watched in horror as bandages drenched in blood were replaced, drenched, and replaced again. When I saw her life blood literally squirting from the site during another dressing change, I lost my usual mild manners and yelled at the medical crew for swifter action. Thankfully, the bleeding stopped after a doctor put steady pressure on her carotid artery.
• Watching her hair (eyebrows and all) fall out was slow at first, but it somberly and visibly marked her struggle. She chose to shave it all off the day it started to shed in chunks as she brushed her hair. I fought back tears as I helped her using my shaver in the hospital bathroom. After it was done, she asked to be alone in the bathroom for a moment. As I heard her softly cry, my heart broke into a million pieces.
And that was only the early weeks of the process, which was long and tortuous, involving chemotherapy twice a week for nine months, six weeks of radiation, and efforts to address all sorts of ailments—extreme pain, bouts of nausea, constant fatigue—that left Johanna frail and mostly bedridden. In addition to multiple types of chemo, all with their own unpleasant side effects, were a dizzying array of drugs to treat the symptoms including clotrimazole, cyclobenzaprine, gabapentin, lidocaine, lorazepam, megestrol, oxycodone, ondansetron, polyethylene glycol, methadone, ranitidine, senna, sucralfate, sulfamethoxazole, and trimethoprim—all which had their own schedules and procedures.
Any plans we had to continue visiting colleges, teaching her how to drive, and generally enjoying family activities before she went off to college were all indefinitely shelved. It wasn’t until a year into the treatment that she began to feel better enough to walk around with a walker.
Seeing others in the cancer ward of the hospital, we could see that we had many advantages. Some kids didn’t have parents who could be with them 24/7, since they had to work, often hours away from the hospital. Some had a worse diagnosis—I recall one brave girl who was hoping to live just long enough to attend her senior prom. Some were so young they couldn’t understand why the pain they were feeling wasn’t some kind of punishment—I heard one toddler tell their caregiver that they would “try to be better.”
There were some small moments of joy during the experience once nights in the hospital became less frequent. Shopping for wigs was actually fun—Johanna picked out a blond bob-style with pink strands and a long curly black and blue-green one. We managed to do some activities that had good disability accommodations—a traveling Cirque du Soleil show in northern Virginia, a musical in New York, and a visit to Virginia Beach to see my wife’s family, where we happily sang karaoke for hours. The most thrilling news was when she decided to still apply to college and was accepted early decision to her first choice, Salisbury University on the eastern shore of Maryland, just over two hours away from my home in Washington, DC.
I certainly understand how some folks turn to faith in such situations. Anything you can do to get by is worth trying. But for me, my atheism couldn’t be more firmly cemented by the experience. If someone or something capable of preventing such tragedies stood by and watched while they happened, “good” could no longer be used in the same breath as their name. For we know that to stand by idly when we could act is itself an act that we call complicity. And complicity in the face of such horrors is unforgivable.
After 10 months, 15 cycles, 30 days of radiation, and 79 infusions, Johanna’s main chemo treatment was complete and, remarkably, she was declared cancer free. Since her variety of cancer has among the highest risks of recurrence, the road remained long as she continued the fight, receiving preventative chemo almost weekly for 12 more months. Her hair began to slowly grow back and she was getting stronger every day. Today, her chemotherapy regimen is complete and her most recent scans show no signs of recurrence. Through resilience, science, and support, she beat the odds.
After this long and arduous process, with the fog of the cancer drugs receding, Johanna understandably couldn’t wait to get back to living—attending school, seeing old friends and making new ones, and experiencing a normal life. That’s why her doctors, along with most of the family and I, were so pleased Johanna was cleared to attend university—even the limited pandemic version of the experience. Last month I dropped Johanna off back at Salisbury after she came home to get her chemo port removed (seamlessly this time), another big milestone.
For the next few years she’ll get quarterly scans to make sure the cancer does not come back. Meanwhile, while she’s taking precautions to avoid COVID-19, she’s enjoying college, thriving in her philosophy and psychology courses, and looking forward to a class in glassblowing next semester.
At this stage all I want to do is thank the doctors, nurses, hospital staff, friends, and family who gave Johanna the best chance she had to live a good life. Personally, I’ve relearned patience and caregiving, and appreciate the silver lining about how this brought me closer to my daughter. I hope there’s value in sharing this story with others so the lesser-known aspects of cancer can be better understood, and families who go through it have the small consolation of knowing they aren’t alone. For those who want to learn more, I’d suggest avoiding online groups where rumors about “miracle” treatments and exceptions are the focus, often resulting in heightening fear and anxiety. Instead, I recommend listening to your doctors, reading resources from government agencies and credible organizations working for the public good, and joining live support groups run by professionals that can provide meaningful guidance.
Thankful to all who were part of the process, most of all Johanna herself, we cautiously move from day to day, building confidence in the possibility of a bright future.