For many Americans, the promise of the vaccine has been a buoy, a light floating out beyond the rough waves and volatile tides of the Covid-19 pandemic. A promise that landfall is finally ahead. And now, as the CDC lifts the recommendations for mask-wearing by the vaccinated, I want to celebrate the science and humanity that it took to get us here. In my fantasy I’m running on the metaphorical beach in slow motion, whipping off my mask, hugging my friends, breathing in joy, safety, and relief. But I can’t. Not yet. And I’m not alone.
My daughter, a pediatric cancer survivor who just turned 10, has a lingering immunodeficiency, a parting gift from the treatments employed to save her life. In short, my kid’s body doesn’t make antibodies, so even when a vaccine is approved for her age group, it most likely won’t protect her. Her little B cells — part of the immune system that retains the memory of how to fight infectious diseases, the part that vaccines are designed to engage for future protection — aren’t functioning properly. So the only way she can be protected from Covid is if the people around her — everywhere — are.
Along with my fellow New York State educators, I qualified for the vaccine in January. I made my appointment immediately, tears rolling down my cheeks. And now, my relief and hope activates my desire to be heard by the herd: Those of us with medically complex children depend on our community for protection. Our kids won’t be protected unless you are.
Pediatric cancer holds an irresistible place in our cultural imagination. It inspires prayer threads that weave through religious and secular social media circles, lifting up sick babies and their families in good thoughts and prayers. Little yellow hands pressed palm-to-palm pop onto screens around the world.
And yet, I wonder how it would be received if we created similar campaigns asking people to commit to getting the vaccine for those same babies. Prayers are welcome, of course, but not more than trusting science and taking the steps to protect fellow vulnerable humans.
My hope is anchored to my compassion. I understand that some people have concerns about the vaccine. I know from experience how difficult it is to trust in something that you know very little about. My daughter had never taken anything stronger than over-the-counter children’s pain relievers before her diagnosis at 6 years old. Days later, I sat in the hospital while a doctor told me about a possible side effect from one of her chemotherapy meds. Simply put, he said it could “impact the heart’s ability to pump blood out.”
Emotionally and physically exhausted, my mind spun for a moment as I thought, “Wait a minute. How many other jobs does the heart do again? Isn’t that the main job?”
We had to hope for the best and trust the science.
This was the beginning, nearly four years ago, of my journey as my daughter's healthcare advocate. Launched into a treacherous new landscape, I struggled to make sense of her cancer diagnosis and the intense immunotherapy and chemotherapy treatments that followed. There was no time to process how to approach this life-altering, possibly life ending, challenge. When pushed to the absolute brink of my capacity for heartbreak and fear, I did the only things I could do: I could love her and I could learn. My teachers were nurses, oncologists and “Child Life Specialists.”
I learned on the fly because I had to. I’ve had a hands on crash course in blood cancers, the immune system, and doing-what-I-have-to-do-because-I-have-no choice. I also learned how to ask questions and where to go for answers. I learned about how much we know about the human body and how much we still don’t understand. Having spent my career in the arts and education, I appreciated the devotion of scientists and medical practitioners. They chose to be there, when I would have chosen any other place.
We had to take the leap. There were no other options. I had to trust our doctors; to learn how to weigh the risks with the possible benefits. My daughter’s life depended on it. We had to hope for the best and trust the science. That’s what I’m doing now: I’m hoping that those who can, will get vaccinated as soon as possible in order to create the critical mass needed to establish herd immunity to keep those who can’t be vaccinated safe.
I can’t bear to think that some of those same people, people who now refuse the vaccine, could also be her demise.
I know that, by leaning into their distrust of vaccines, people aren’t intentionally deciding to be cruel to families like mine. For some, the pandemic has painted the Covid-19 vaccine decision into a political corner where a deep chasm of fear fortifies a lack of trust in our governmental and health systems. For many, there are access and equity challenges, as well as a history of racial bias. But facts are facts and here we are, facing the reality that a sweeping misunderstanding of data and science could prevent our country from reaching the tipping point of herd immunity. When I consider the big picture, I become overwhelmed and don’t know how to help. But I have to do something — I’m the mom of a vulnerable kid.
I feel like a sham putting out a plea to the world to vaccinate after learning just recently that some of my own family members aren’t getting the Covid-19 vaccine. To be clear, these are people I love; people who held us in our darkest days. But I don’t know how to talk to them about this.
Last month, our daughter graduated to “Long Term Follow Up” after being cancer-free for three years. This is a big milestone in the pediatric cancer world. We are incredibly lucky to be here. I know too many families who have lost their beautiful children. I wish we could breathe easier as we celebrate. So many strangers saved my daughter — blood donors, participants in long ago clinical trials, researchers behind the scenes in labs, fundraisers who screamed from the rooftops as to how underfunded childhood cancer research has been — they all contributed to the treatments that saved her. I can’t bear to think that some of those same people, people who now refuse the vaccine, could also be her demise.
I never expected to be a family who depends on the time, health, and blood of others. It is infinitely humbling. I hope you never find yourself in our shoes, asking strangers for help. And, yet, here I am asking strangers who may be on the fence about getting the Covid-19 vaccine to please, please reconsider.
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