From the moment we learn we’re expecting, the worries begin. The list of potential complications during pregnancy feels endless, and as new parents, we breathe a sigh of relief when our baby arrives healthy. But what happens when that joy is overshadowed by an unexpected medical diagnosis?
This is the reality for a family from New Jersey. Lucas and Sarah Dawson describe their one-year-old daughter, Mia, as a typical toddler who smiles and laughs—on good days. However, there are also challenging days when she experiences pain, struggles to eat and drink, and feels unusually tired. Mia has been fighting a rare form of leukemia for the past 14 months. With her devoted parents by her side, she remains a beacon of strength and resilience, inspiring her family through this difficult journey. Though her experience is uncommon, it sheds light on a reality many hope to avoid.
Just before her first birthday, Mia developed a persistent fever that wouldn’t subside despite her parents’ and doctors’ best efforts. After ten days, Sarah took Mia to the emergency room; due to COVID protocols, only one parent was allowed to accompany her. It was there that Sarah received the heartbreaking news—her baby girl had cancer. In a moment of despair, she handed the phone to the doctor, who then delivered the news to Lucas at home.
According to the American Cancer Society, one in three children diagnosed with cancer has a form of leukemia. Of these cases, three out of four are acute lymphocytic leukemia, while the remaining cases are acute myeloid leukemia (AML). Mia is battling a rare subtype known as RAM, which is particularly aggressive and resistant to chemotherapy. According to the Dawsons, there are only about 20 cases like Mia’s among the approximately 15,000 pediatric cancer diagnoses each year. The nature of her illness requires Mia to receive all treatments as an inpatient, leading to an average month-long hospital stay for each round of chemotherapy.
Children with leukemia struggle to produce healthy blood cells, making them vulnerable to infections. Those diagnosed with this type of cancer have a 30% higher chance of relapse. In 2018, over 19,520 people were diagnosed with AML, and sadly, more than 10,670 lost their lives. Unfortunately, there is no definitive cure for this type of cancer. While most patients undergo chemotherapy, a bone marrow transplant remains the only potential cure for some.
Since the pandemic began, restrictions have complicated the lives of families with hospitalized loved ones, particularly those managing their child’s health. Many hospitals continue to limit visitors, shorten visiting hours, and restrict meal deliveries, making it hard for parents to support each other during such trying times. Added to this is the emotional toll of deciding who stays home with siblings when only one parent can visit.
For Lucas and Sarah, the pandemic has intensified their struggles. They shared, “Mia’s diagnosis made everything feel worse. We felt trapped in a hospital room, with our son Ethan unable to visit his sister.” Initially, hospital staff allowed the Dawsons to stay together for the diagnosis, but once they received the news, they had to split. “Due to COVID restrictions, only one parent could be in the hospital with Mia,” they said. “When we switched, it was in the parking lot while someone else watched Mia.”
Imagine navigating a cancer diagnosis while the world is grappling with a pandemic. Lucas and Sarah have shown remarkable courage and resilience, striving to support their family, especially their children. They faced tough decisions throughout the journey of caring for a child with cancer, compounded by the unpredictable nature of COVID-19. They recounted, “The night Mia received her diagnosis, Sarah returned home while Mia began chemotherapy, only to end up in the intensive care unit that same night. The stress was overwhelming. We knew no parent should have to face this alone, yet some families were forced to say goodbye to their child one at a time due to visitation restrictions.”
Through persistent advocacy, the Dawsons were able to persuade the hospital to change its visitation policy, allowing both parents to be with Mia. However, they still faced the looming threat of COVID-19. They also campaigned for parents and caregivers of critically ill children to receive vaccine access. “Initially, we approached the hospital, but they were only vaccinating staff. Since late January, we’ve been advocating for prioritizing parents and caregivers for the vaccine, but with little success.”
As parents, the fight to be the best advocates for our children continues, even amidst a pandemic that complicates hospital stays for those not affected by COVID-19.
Thanks to the efforts of an organization called Be The Match, Mia received exciting news recently—a donor has been found. Be The Match specializes in connecting bone marrow donors with patients battling blood cancers like leukemia. The more people that register, the better the chances for children like Mia to find the match they desperately need. Signing up is simple; a non-invasive cheek swab arrives at your door, and you just mail it back to join the registry and potentially save a life.
Throughout this challenging journey, Lucas and Sarah have held onto hope, wanting other parents to know they’re not alone. Their best advice? “When facing a cancer diagnosis, it’s like receiving a tough cake with sprinkles; focus on the sprinkles.”
Mia’s family has set up a GoFundMe page to help with the financial burden of medical expenses. You can learn more about families facing similar challenges and how to support them at Project Stella. For further information on pregnancy and the journey to parenthood, check out our other blog posts at Home Insemination Kit, which provides great insights and resources. Additionally, Make A Mom is an authority on at-home insemination kits, and ACOG offers excellent resources for treating infertility.
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In summary, the journey of parenting a child with a serious illness, compounded by the challenges of a pandemic, is a daunting one. The Dawsons’ experience serves as a reminder of resilience and hope amidst adversity, encouraging others to focus on the positives even in difficult times.