Amanda Monteiro is a leukemia mom, volunteer, and Children's Initiative Ambassador for The Leukemia & Lymphoma Society (LLS), advocate for pediatric cancer research and palliative care, graduate student of clinical social work, and mother to Eleanor on earth and Edie in heaven.
Today is International Childhood Cancer Day, a day that had little significance for me less than four short years ago. In October 2017, I heard the words, “your child has cancer,” which I soon learned could only be eclipsed by, “there is nothing more we can do.”
I gave birth to my first child, a happy and healthy baby girl, on July 30th, 2016. Edie was born eyes wide open with a fear of missing out that was unparalleled. She challenged and surprised, enchanted and delighted us with each milestone she achieved. She commanded audiences with her sparkling blue eyes and infectious smile. She was directive and willful beyond her earthly age. I relished every moment. For 14 months, I lived blissfully ignorant of what life had in store for our family.
Only a few days after reaching 14 months old, Edie had her very first fever and had coincidentally bumped her head as she toddled across our hardwood floors, leaving an alarming bump and bruise at the point of contact. A visit to the emergency room yielded no major discoveries, just a potential virus and possible teething. The next morning, her pediatrician came to the same conclusion as the emergency room doctors. But Edie continued to decline, ceasing to walk, talk, and eat. The next day she lay listlessly in our arms while the fevers persisted. A return to the emergency room had little impact on the assessment of her medical condition. By the fourth day, her little belly was swelling; once soft, it became firmer. As her circumference grew, her skin became taught with veins, once invisible, creating a roadmap to what ailed her.
An hour and a half of imaging and bloodwork irrevocably changed our lives. While snuggling against Edie in an adult-sized hospital gurney, a small army of doctors appeared from various disciplines led by hematology/oncology. Edie had a dangerously low platelet count of 17 (low end of normal is 150), a 5 cm mass near her kidneys, an enlarged liver and spleen, and a brain bleed. Her belly was swollen as a result of her enlarged organs and fluid that had filled every available cavity, making its way into her lungs. Edie had cancer. It would take two weeks to diagnose her specific type as the cancer had spread at a malicious pace.
Within four days, Edie had transformed from a healthy and precocious toddler to a shadow of herself. Edie was dying. In an unprecedented move, Edie was started on chemotherapy prior to a diagnosis because of how serious her condition was. Her cancer had so profoundly impacted her bone marrow that it made it impossible to extract for testing. A specific diagnosis was a luxury we didn’t have time for. Luckily, chemotherapy saved her life this round, but the war was far from over. Two weeks later, we learned that Edie had a type of pediatric acute myeloid leukemia (AML), one of the deadliest forms of childhood cancer. Her cancer’s subtype and unique biology diminished her likelihood of survival. Her treatment relied on decades-old, one-size-fits-all chemotherapy delivered at the highest possible dosage she could withstand.
We moved out of our New York City apartment and into the hospital, living in isolation alongside Edie for six consecutive months, celebrating every holiday from Halloween through Easter in her tiny room. Her treatment destroyed her immune system, leaving her susceptible to life-threatening infections, which placed her in and out of the pediatric intensive care unit. She experienced chemo-induced kidney trauma and needed five adult blood pressure medications to reduce her risk of neurological damage. She lost and regained and again lost her ability to walk and eat. And despite the chemo being able to do so much, the one thing it was supposed to do, the one thing it couldn’t do, was kill the cancer.
After four rounds of high dose chemotherapy cocktails, Edie’s cancer remained resistant, making its way to her liver. On Easter Sunday, April 1st, 2018, her liver failed, and we were brought to our knees as our ears rang with the words, “there is nothing more we can do.” Just five days later, on April 6th, I knew the sun would not rise again on my little girl. Cuddled tightly in her hospital bed between her dad and me, I promised to do everything in my power to prevent another parent from experiencing this devastating tragedy, committing myself to ensure better futures for kids like her. Edie sealed my promise with three more breaths before departing on the wings of her last exhale.
Since Edie’s death, finding a meaningful way to keep my promise to her and create a legacy that lives beyond the time she had on this earth has been vital to my own survival. In the nearly three years since her death, my husband and I have been team captains participating in various events with Team In Training and raising over $450,000 for The Leukemia & Lymphoma Society (LLS). Our efforts have been particularly meaningful since the launch of the LLS Children’s Initiative.
Today, I am a volunteer and national ambassador for this lifesaving initiative expediting care and cures for children, adolescents, and young adults with blood cancer. The LLS Children’s Initiative involves: more dedicated pediatric blood cancer research; plans for the first global precision medicine clinical trial in pediatric acute leukemia (PedAL), expanded free education and support for children and families, and advocacy efforts to break down barriers to care and accelerate new treatments. As a volunteer and ambassador for the LLS Children’s Initiative, I am able to lend my voice and experience to not only bring awareness and raise funds, but to take meaningful action in providing feedback to help shape and guide this initiative. I also identify volunteer opportunities that help parents and supporters become involved in maximizing the efforts of this project.
The LLS Children’s Initiative is poised to change a research paradigm that enabled progress to lag, ultimately failing Edie. It is too late for Edie, but this initiative gives me hope that we can work more collaboratively to create a new paradigm that places children in the center of the research and development process, expediting cures for kids and ensuring other parents do not have to experience the heartbreak I feel.
LLS offers a wide array of free education and support for pediatric blood cancer patients, survivors, parents, caregivers, and families. Contact LLS Information Specialists—highly trained oncology professionals—for free, one-on-one support at (800) 955-4572 or by live chat email/here. Or click here to find free educational and support resources.