Sickle cell disease and leukemia: One family’s resilience through them both
It’s difficult enough learning about one medical diagnosis for a child, but for the Hardy family, their youngest two daughters were diagnosed with two different illnesses within the same month.
Shortly after giving birth to her third daughter, Hannah, Evelyn Hardy found out that the family’s newest member was born with sickle cell disease, a genetic blood disease. Soon after that, her second youngest daughter, Joy, who was only a year-and-a-half at the time, was diagnosed with acute lymphoblastic leukemia (ALL).
“It’s been hard,” said Evelyn thinking back on the last two years. “But throughout everything, we have relied on God.”
Evelyn and her husband, Horatio, have managed to stay positive throughout the process. They’ve added new routines to their daily lives to manage the care of their kids.
Before receiving the diagnosis, Joy had experienced high fevers and began to limp. The family made frequent trips to the doctor until they were referred to Children’s Minnesota where she was diagnosed with ALL. Throughout the treatment, Joy has shown her resilience.
“Amazingly, she takes all her medications and doesn’t fight us about it,” said Evelyn in awe.
Her family has had to adapt to life with a sick child, where limiting exposure to others was normal even before COVID-19. It was difficult for Evelyn to watch as Joy’s hair fell out early on in treatment, but it began to grow back after a year of treatment. Two years later, she’s in remission and doing great.
Horatio can’t help but gush about his daughter. “She’s a strong kid. She used to tell us not to worry,” he said.
“She talks a lot,” said Evelyn. “She’s an amazing kid. She’s probably the strongest person in our family right now.”
Shortly after birth when Hannah was diagnosed with sickle cell disease through Universal Newborn Screening, she was referred to Children’s Minnesota Hemoglobinopathy and Sickle Cell Program, a nationally recognized program that treats the majority of children and teens in Minnesota with abnormal hemoglobin and anemias.
Sickle cell disease affects the red blood cells and can block off small blood vessels and cause dangerous complications which can lead to pain, stroke, and life-threatening organ damage. With very specific comprehensive clinical care and close monitoring at Children’s Minnesota, along with taking medications regularly, thankfully, Hannah has avoided many of the complications associated with the disease.
There is no broadly accessible cure for sickle cell disease but patients may take medications, receive blood transfusions and be followed by a sickle cell expert for close monitoring to address any complications that may develop, at an early stage.
“You adapt to change and make it the new norm,” Evelyn said. “We added things to our normal routine and went with it.”
Support from Children’s Minnesota during a difficult time
Managing two complex medical diagnoses has presented other challenges for the Hardy family. Initially after receiving the diagnoses for their daughters, Evelyn had lost her job and the bills were piling up.
That’s where Children’s Minnesota’s social work team came in. They assisted the family with financial resources that helped the family get back on their feet.
“We really appreciated the people that have been on our team,” said Horatio about the excellent medical staff and social services that supported the family during their journey.
Now, Evelyn and Horatio are still managing their busy household, with the two working from home and juggling their four children. Joy finished her treatment in October, and Hannah will continue with her regular checkups and medications.