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What To Do When Life Hands You a Difficult Diagnosis: Insights From Lily’s Parents
by Jamie Thompson
Updated: March 19, 2021
Originally Published: March 19, 2021
From the moment a new life is conceived, future parents are filled with worry. The list of concerns is endless, running through our minds relentlessly throughout the nine months of pregnancy. When the baby finally arrives, we breathe a sigh of relief, grateful for a healthy child. But what happens when an unexpected diagnosis follows that joyful moment?
This is the reality for a family from Rhode Island. Alex and Mia Roberts describe their one-year-old daughter, Lily, as a typical toddler who giggles and plays — on some days. Yet, there are other days filled with challenges: those when pain, difficulty eating, and fatigue take over. Lily has been diagnosed with a rare form of leukemia, a battle she has faced for the past 14 months. With her parents supporting her every step of the way, Lily continues to embody strength and resilience, offering inspiration to her family. While their experience is uncommon, it sheds light on a world most of us hope to never encounter.
Just before her first birthday, Lily developed a persistent fever that resisted treatment for ten days. When Mia took her to the emergency room, only one parent was permitted to accompany her due to COVID-19 protocols. It was here that Mia received the devastating news — their daughter had cancer. In a moment filled with anguish, she handed the phone to the doctor, who conveyed the heart-wrenching diagnosis to Alex at home.
According to the American Cancer Society, one in three children diagnosed with cancer has leukemia. Among these, the majority are diagnosed with acute lymphocytic leukemia, while others face acute myeloid leukemia (AML). Lily’s type — a rare variant of AML known as RAM — is particularly aggressive, with a low survival rate. The Peppers state that only about 20 cases of this subtype emerge annually from 15,000 pediatric cancer diagnoses. Due to the aggressive nature of her condition, Lily undergoes inpatient treatments for her chemotherapy, typically spending around a month in the hospital for each round.
Leukemia affects the body’s ability to produce healthy blood cells, leaving patients vulnerable to infections. According to CNN, those diagnosed with this form of cancer face a 30% higher risk of relapse. In 2018, over 19,520 individuals were diagnosed with AML, and more than 10,670 succumbed to the disease. While chemotherapy is the standard treatment, the only potential cure for some patients is a bone marrow transplant.
The pandemic has compounded the challenges faced by families with hospitalized loved ones. Many hospitals impose strict visitation policies, limiting the number of visitors and reducing visiting hours, which can make it even harder for parents coping with their child’s health issues. For the Roberts, the emotional strain has been overwhelming. They shared, “Lily’s diagnosis heightened everything. We felt trapped, not only in our home but now in a hospital room, separated from our son, Noah.”
The hospital staff had allowed them to remain together while awaiting the diagnosis, but once it was confirmed, they had to switch off in the parking lot, as only one parent could be present with Lily at a time.
Can you even fathom traversing a cancer diagnosis while COVID-19 looms large? Alex and Mia have shown incredible bravery, stepping up for their family, particularly for their children. They faced tough decisions while navigating the uncertainties of raising a child with cancer, all while battling the unpredictable twists of the pandemic.
The night Lily received her diagnosis was particularly harrowing; she was admitted to the intensive care unit that same evening. With visitation restrictions still in place, each parent had to face the situation alone at times. “Parents were sometimes forced to say goodbye to their children one at a time, unable to be together,” they noted.
Through relentless advocacy, the Roberts managed to persuade the hospital to amend its visitation policy, allowing both parents to be present. However, that did not eliminate their risk of contracting COVID-19, which remained a continuous threat. They also worked to enable parents and caregivers of critically ill children to access the vaccine. “Initially, we approached the hospital, but they were only vaccinating staff,” they explained. “Since January, we’ve been lobbying for parents and caregivers to be prioritized for vaccination.”
As parents, the fight to be the voice for our children is never-ending, even amidst a pandemic that complicates the lives of families dealing with hospital stays for non-COVID-related issues.
Fortunately, thanks to an organization called Be The Match, Lily recently received the long-awaited news that a donor had been found. Be The Match facilitates connections between bone marrow donors and patients with blood cancers like leukemia. The process is straightforward: sign up online, receive a non-invasive cheek swab kit, and send it back — a simple way to join the registry and potentially save a life.
Throughout this harrowing journey, Alex and Mia have maintained hope and want other parents to know they are not alone. Their best advice? “When faced with a cancer diagnosis, it’s like receiving a difficult cake with sprinkles. Focus on the sprinkles.”
Like many families, the Roberts have established a GoFundMe page to help manage the financial strain of medical expenses. To learn more about other families facing similar hurdles and how you can lend a hand, visit Project Stella.