For the past ten years, we’ve had a saying. “It isn’t cancer.” We don’t say it often. It’s reserved for serious things that need a little perspective. We said it a few months ago when Isabelle got into a car accident a week after getting her license and the damage was more than the car was worth (she and the other person were ok). We said it a few years ago when our goldendoodle, Obi, was attacked by a pack of coyotes and needed to be stitched up from head to paws. And I said it a few weeks ago when Shane was worried that the animals were getting at his compost bin. All serious things. But not cancer.
Because pediatric cancer takes seriousness to a new place. One that you can’t imagine. A place that I swear has monsters. Emily had stage IV high-risk neuroblastoma. One of the worst pediatric cancers a four-year-old can be diagnosed with. The odds of survival are 50/50. To beat it, kids are treated with the harshest therapies in the arsonal. Emily needed six rounds of chemo to shrink the tumor on her adrenal gland and then an eight hour surgery to remove it. The neuroblastoma was still everywhere, so she had two back-to-back stem cell transplants, which almost killed her. After her transplants, she had 21 rounds of radiation and then six months of an experimental antibody therapy. We spent over 300 nights in the hospital.
It would be difficult to convince me that there could be anything worse than what we lived through. A health crisis, especially one that involves your child, has the power to bring you to your knees in a way nothing else can. It makes you stop, pause, and question everything. It makes you compare it to other really bad things.
Like the coronavirus. In most comparisons, neuroblastoma wins. But this time, the coronavirus is putting up a pretty good fight and showing some uncanny similarities. Uncertainties. Germs. Social distancing. Missing important dates, like birthdays.
For days and weeks and months after Emily’s diagnosis, I struggled to comprehend that Emily had stage IV neuroblastoma. It didn’t seem possible. My daughter couldn’t have cancer. Other people got cancer. Not Emily. But the doctors kept telling me that indeed she had cancer. Its unpredictability nearly killed me. Anxiety became my normal state of being. My heart beat fast when I was driving in the car or washing my hair in the shower. My mind struggled to make sense of what was happening. I needed answers that no one could provide. I once tried Googling my questions but that only made me feel worse.
During Emily’s stem cell transplants, I’d wait for doctors’ rounds like a higher power was coming to tell me her fate. Pediatric oncologists knew things I didn’t and I wanted answers to the questions I thought about from morning until night. When will her kidneys recover? When will her white blood cells go up? When can we go home? But most of the time they’d say, “We’re going to need to wait and see.” And that seemed unfair. I had waited 24 hours for answers and they gave me nothing. Basically they said: WE DON’T KNOW.
To make up for the uncertainty in my life, I made a habit of going to Starbucks every day when Emily was in the hospital. One day when I left the hospital for Starbucks, I asked Emily’s nurse what she wanted. “Grande black,” she said. When I returned, she thanked me for her coffee, took off the lid, and squirted Purell on the sip hole. Then she dried it with a wad of tissues.
A nurse who was watching her wrinkled her nose and asked, “What the heck are you doing?”
“Germs,” she said. “I take care of kids with cancer. I can’t risk what the Starbucks cashier might have.” And I loved that nurse even more that day because she made me realize how much she cared about Emily and also feel better that I wasn’t the only one being neurotic about germs. My fear of germs was only secondary to my fear of cancer.
During treatment, I learned how to properly wash my hands. I didn’t go anywhere without hand sanitizer. Every place seemed dangerous. It seemed as though there were liabilities everywhere that could result in Emily’s death. Avoiding them was a job unto itself. But no one in the functioning normal world seemed all that concerned about them. But my mind went wild with the places they were. On my car keys and steering wheel. On the clothes I wore, the handles I touched, and on my shoelaces that would often come undone. I feared germs more than I feared gaining weight. It was that real. When we given the rules of Emily’s transplants my germ worry turned into a germ phobia. Opened bags of chips or anything else in a bag or box was to be thrown away within 15 minutes of opening it. To-go pizza could not be cut with the knife at pizzeria. Soft serve ice cream was a no. Deli meat was a no. No visitors. No homemade food from anyone. I stopped touching door handles, community pens, and other people’s keyboards. I wore gloves everywhere and would “borrow” a box of gloves from the hospital to keep in my car when I needed to run into CVS for a script. Normal things were made hard because of the caution I needed to take.
To make matters worse, we had to social distance to keep Emily “safe.” In treatment it was called isolation. We didn’t have small gatherings. We didn’t eat out. We didn’t socialize with friends. We didn’t let anyone in the house except for the VNA nurse. I went to work because the bank still expected me to pay my mortgage even though my kid had cancer. At work, I kept my distance from people and made them aware that I couldn’t be exposed to their germs. I asked cashiers to sanitize their hands before running my grocery items through. We took our shoes off before going in the house because hospital floors (and just about any floor) carry awful pathogens and germs that could have made Emily sick.
Our family became one unit; one person’s germs were everyone’s germs. We sent Isabelle to school and put the school nurse and her teacher on alert that we needed to be aware of any illness in the school. When we were told that a student had the stomach bug we kept Isabelle home. When it was the chicken pox we kept her home again. A social day was being able to have a blood transfusion at the Jimmy Fund Clinic instead of being isolated in the hospital or home. But Emily was on precautions, so Isabelle, Emily and I would cram into a patient room (the size of a regular doctor’s office room) and watch Sponge Bob and Cinderella on a portable DVD player over and over for about six hours. Even the good days wore me down.
At a low point during treatment, when I had nothing left to give, I yelled at Isabelle because she couldn’t stop coughing. It was late at night and I was scheduled to go to the hospital the next day and couldn’t bring her germs with me. Around the same time, Shane got sick and needed me to stay at the hospital for an extra week so that Emily wouldn’t be exposed. My heart sank. I was desperate for my own bed, bathroom, homemade food, and more than three hours of sleep. But then I felt selfish for thinking of my own comfort because Emily’s emotional health was suffering and nothing I did seemed to help.
She knew that her friends and her sister were at school and that she was in the hospital. She asked why she couldn’t see them. She asked why she couldn’t leave the hospital. She sobbed because she missed school and her teacher. She cried because she was desperate to see Isabelle but H1N1 restrictions were in place and no kids were allowed in the hospital. “I’m never going to be able to see her again,” she sobbed. “And I’m never going to be happy ever again.” Being apart wasn’t good for their well being. Or mine.
And then we had to get savvy about dates. Like Easter. And birthdays. Emily “celebrated” her 4th and 5th birthday in the hospital. I was angry on her 4th. I was more angry on her 5th. Yet there was nothing I could do other than change the day we celebrated it. Her 4th birthday was a little anticlimactic because she was getting hit with massive chemotherapy. Shane told me that I cared more about celebrating it than she did. He was right. But on her 5th birthday she was on the trial part of her treatment, so we waited a month and had a big party in our backyard. Other dates needed to be moved during treatment too. Isabelle’s birthday and Thanksgiving had to be moved last minute (literally last minute) because Emily needed platelets and had to go to the Jimmy Fund for a blood transfusion.
Yet the only thing that mattered when Emily was sick was making the cancer go away. Nothing else mattered. Not Isabelle’s grades at school. Not what our yard looked like. And not what anyone thought of us. The only thing we thought about and cared about was a healthy cancer-free Emily. Please help Emily get better and I won’t complain about anything stupid again, I’d say out loud hoping some higher power would hear me. And maybe one did. Because she did get better.
And now our family is facing a similar situation with the coronavirus; but this time around, it’s a shared experience with all of you. I know that right now you want answers and certainties. I know you want to stop worrying about germs. I know you want to be able to celebrate holidays and not have to social distance. You want your old life back. The one you used to complain about. The one where a broken dishwasher or detour on the way to work was a big deal and made you feel as though life was unfair and was picking on you. And you knew other people had bigger problems. Cancer, accidents, and unforeseeable events. But you reasoned that those problems were tragic or flukes. Ones that wouldn’t happen to you. Ones that you felt awful about but Oh my goodness, when the heck are they going to finish with this detour because it’s making me late for work?! Normal life has a way of sucking us in and making us focus on ourselves.
But here we are. All of us. In quarantine. This was not part of “the plan.” The plan was graduations, athletic games, shows, work, playdates, school, and vacations. This was not part of the deal. And I’m not sure who makes the deals but this one feels unfair. Health crises usually are.
But don’t give up just because things seem unfair. You are resilient. More than you think. Cancer put my life in perspective. Perspective has the power to change the unchangeable. Maybe the Frozen 2 soundtrack is stuck in your head. Maybe your spouse’s tendency to whistle throughout the day has you reconsidering your marriage. Maybe your sticky kitchen floor resulted in a meltdown and begged you to ask the question, “Is anyone going to help me clean?!” But add a little perspective. You are in your house with your family. You are safe. You are healthy. You will be ok. And not everyone can say that right now.
The coronavirus is serious. No one will argue that. It’s something we’ve never experienced and something we hope we’ll never have to again. My family felt the same way about cancer. Both have had the power to shift life as we know it in our house. Will the coronavirus be able to pass the “It isn’t cancer,” litmus test? I don’t know. We’ll have to wait and see.