From the moment they learned they were expecting, potential parents often find themselves overwhelmed with worry. The anxieties surrounding what could go wrong during those nine months linger long after the baby is born. But what happens when, instead of a joyous welcome, a shocking diagnosis turns that happiness upside down?
This is the reality faced by a family from Rhode Island. Sarah and Mark Johnson describe their one-year-old daughter, Lily, as a typical toddler who brings laughter and joy — on some days. Yet there are other days filled with struggles: pain, difficulty eating and drinking, and overwhelming fatigue. Lily has been bravely fighting a rare type of leukemia for the past 14 months. With her parents standing firmly by her side, she embodies strength and resilience, offering inspiration to those around her. While her experience is uncommon, it opens a window into a world that many hope to avoid.
Just before her first birthday, Lily developed a persistent fever that defied the best efforts of her parents and doctors. After ten days of trying to manage her symptoms, Sarah took Lily to the emergency room, where COVID-19 protocols allowed only one parent to accompany her. It was there that Sarah received the devastating news: their daughter had cancer. Distraught, she had to hand the phone to the doctor so he could relay the diagnosis to Mark, who was left to process the news alone at home.
According to the American Cancer Society, one in three children diagnosed with cancer has a form of leukemia. Among these, three out of four children are diagnosed with acute lymphocytic leukemia, while others are diagnosed with acute myeloid leukemia (AML). The specific type of cancer Lily battles — a rare subtype known as RAM — is particularly aggressive. Of the roughly 15,000 pediatric cancer cases diagnosed each year, only about 20 are similar to Lily’s. This subtype has a poor prognosis, being resistant to chemotherapy and prone to relapse. Consequently, Lily must undergo all her treatments as an inpatient, spending an average of a month in the hospital for each chemotherapy round.
When a child faces leukemia, their body struggles to produce healthy red and white blood cells, which are crucial for fighting infections. Patients diagnosed with this type of cancer have a 30% increased risk of relapse. In 2018, over 19,520 cases of AML were reported, and over 10,670 resulted in fatalities. There is currently no cure for this cancer; while chemotherapy is a common treatment, some patients may require a bone marrow transplant as a last resort.
Since the onset of the pandemic, COVID-19 restrictions have further complicated the lives of families with hospitalized loved ones. Many hospitals limit visitors, reduce visiting hours, and prohibit meal deliveries, leaving parents to navigate these challenges alone. Additionally, support group meetings and comfort rooms have been restricted, making it even harder for families to find solace.
For Sarah and Mark, the burden they carry has only intensified during the pandemic. They shared, “Lily’s diagnosis made everything more overwhelming. We transitioned from feeling trapped at home to feeling isolated in a hospital room, with our son Ben unable to visit his sister.” Although the staff initially permitted them to remain together for the diagnosis, they were forced to split once the situation became critical. “COVID restrictions meant only one parent could be with Lily at a time,” they explained. “When we switched shifts, it was like a relay race in the hospital parking lot.”
Imagine navigating the emotional turmoil of a cancer diagnosis while also contending with a global pandemic. Sarah and Mark demonstrate incredible bravery as they strive to support their family. Throughout their journey, they faced difficult decisions, all while coping with the unpredictability brought on by COVID-19.
The night Lily received her final diagnosis, Sarah returned home, and Lily started chemotherapy. Unfortunately, that same evening, she was transferred to the intensive care unit. Again, only one parent was allowed to stay with her. The stress of these circumstances was immense. “No parent should have to endure this alone,” they said. “Due to restrictions, some families had to say goodbye to their children one at a time, without the comfort of being together.”
Through relentless advocacy, the Johnsons successfully persuaded the hospital to amend its visitation policy, allowing both parents to be present with their child. However, the risk of COVID-19 still loomed large. They also pushed for prioritizing vaccinations for parents and caregivers of critically ill children. “Initially, the hospital only vaccinated staff, ignoring the needs of parents who practically live there,” they recounted. “Since late January, we have lobbied for access for caregivers to no avail.”
As parents, the fight to stand up for their children never truly ends, even amidst a pandemic. Thanks to the organization Be The Match, the Johnsons recently received the news they had been waiting for: a donor match had been found. Be The Match specializes in connecting bone marrow donors with patients battling blood cancers like leukemia. The more individuals who join the registry, the greater the chance for children like Lily to find the match they desperately need.
Throughout this ordeal, Sarah and Mark maintained their hope and want other families facing similar struggles to know they are not alone. Their best advice? “When you receive a cancer diagnosis, it’s like being handed a sh*t cake with sprinkles. Focus on the sprinkles.”
To help alleviate the financial strain of medical bills, Lily’s family has set up a GoFundMe page. You can learn more about other families facing similar challenges and discover ways to help at Project Stella. For additional insights on pregnancy and home insemination, check out this helpful resource and visit Make a Mom, an authority on this topic. For more information on infertility, this is an excellent resource.
Summary
The Johnson family’s journey through their daughter’s rare leukemia diagnosis, compounded by the challenges of the COVID-19 pandemic, exemplifies the emotional and logistical hurdles parents face in such dire situations. Through advocacy and hope, they remind others in similar circumstances that they are not alone, offering poignant advice on focusing on the small joys amidst adversity.
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