René Marsh is a national correspondent for CNN.
On March 14, 2019, at around 5:30 a.m., a single tear streamed down my cheek as I cradled my first child, Blake, for the first time. It was like the nurse handed me my heart — it was the purest love. Just nine months later, the same amount of time it took to grow this life in my womb, my motherhood journey changed overnight.
December 22, 2019, Blake, my husband and I were in the emergency room at Johns Hopkins Hospital. Blake’s eye was puffy, watery and appeared crossed. He was admitted to the hospital and the day turned to night and then to the early morning hours of Christmas Eve. After hours of waiting we heard the words, “Your son has a large mass in the center of his brain.” It was as if someone cut the lights and the floor beneath me gave way. I felt the physical sensation of fright and panic as if I was plunging thirteen stories, except I was standing still. I balanced the heaviness I felt in my chest with my duty to fully understand Blake’s diagnosis, what it meant, how we would treat it, what the risks were, what the chance of survival was, and to advocate for Blake as decisions were being made about his care. This was the beginning of my pediatric cancer journey with my 9-month old son. It was worse than a nightmare because I couldn’t wake up from this.
January 21, 2020, Blake completed his first round of chemotherapy. I noticed Blake was extremely lethargic, his extremities felt cold, his face was puffy, his lips appeared darker and his skin did, too. My mommy instinct knew something was wrong. His heart rate was rising and the monitor beeped intermittently. I called in a doctor. An X-ray confirmed Blake’s heart was enlarged. Then, his oxygen levels dropped and a nurse pressed the code blue alarm. I’d never seen anything like it. A loud alarm sounded and within seconds our room was flooded with nurses and ICU doctors. A sonogram revealed fluid was building around Blake’s heart. He was rushed to the intensive care unit, where they planned to drain the fluid. That's where Blake went into cardiac arrest. My husband and I were in a waiting room, when a doctor entered and said, “We can’t find a pulse.” We fell to our knees. I felt those words in the pit of my stomach. Then, the sound of another code blue alarm. I walked out of the waiting room and saw medical staff running. I started running, too. “What room?” I yelled. Someone yelled “Twenty-seven.” That was Blake’s room. I got to the doorway to see a large group of physicians gathered outside. I made my way through the crowd to the doorway and saw a tall and hefty man doing rapid chest compressions on my infant son. Blake’s blood was on the floor, on doctor’s gloves, on their gowns. I watched an incredible team effort as they worked to get Blake connected to ECMO, or extracorporeal membrane oxygenation.
Blake’s heart recovered and after six days and he was removed from life support.
Blake’s oncologist later determined one of his chemotherapy drugs triggered this near fatal reaction. The treatment protocol that second, third and fourth opinions all suggested was Blake’s “best chance of survival” nearly killed him and ultimately did not cure him.
Blake died just one month after his second birthday. His story is emblematic of the challenges that exist in pediatric cancer care. Young cancer patients can suffer toxicities and chronic side effects from the drug treatments intended to cure them. This is because many childhood cancer patients are receiving chemotherapy drugs that were developed and approved for adults decades ago. In Blake’s case, one of his chemotherapy drugs was developed seven decades ago; even though science has shown pediatric cancer is often more aggressive than adult cancer, and molecularly different.
Children are often forced to rely on adult cancer drugs that destroy both cancer cells and healthy cells in their developing bodies. This is in large part because the profit-driven pharmaceutical industry has not prioritized the research and development of cancer drugs specifically for children. Children represent a smaller portion of the market compared to adults, so developing pediatric cancer drugs are less lucrative for the industry.
The funding disparity also exists within the federal government. Only 4% of federal cancer funding is for pediatric cancer research, according to experts.
I wrote the children’s book, “The Miracle Workers: Boy vs. Beast,” in in honor of my son’s favorite pastime: reading. All proceeds from the sale of this book are donated to pediatric brain cancer research. Through the Blake Vince Payne Star Fund, established by the nonprofit Pediatric Brain Tumor Foundation in Blake’s honor, we have awarded a grant to St. Jude Children’s Hospital for infant pineoblastoma research, the same form of cancer that took Blake’s life.
The work of cancer parents goes a long way, but we can’t move this mountain of a problem alone — a larger national effort is needed.
My efforts to raise awareness about the disparities in pediatric cancer allow me a place to direct all of the motherly love that I still have for Blake. I hope that one day my efforts will result in a world where a pediatric cancer diagnosis is survivable, particularly for cancers for which there is currently not enough research.