Like many toddlers, 3-year-old Robert Rosian – often wearing green-tinged dinosaur slippers – spends his days furiously pedaling about on his low-riding tricycle.
For the past eight months, he did so in the hallways of Cleveland Clinic Children’s, his family’s home-away-from-home while younger sister Grace was being treated for leukemia. But not anymore.
Grace, just 17 months old, has weathered the effects of cancer and completed intensive chemotherapy. With her cancer now in remission, she and her family are back home in the aptly-named Cleveland suburb of Strongsville, ready for a long-overdue dose of normalcy.
“With everything Grace has been through, she’s always been a happy baby,” said her mother, Valerie Revell-Rosian. “I don’t think a single day went by that we weren’t able to get a smile out of her.”
Born with Down syndrome, two months early in October 2016, Grace has faced a lifetime’s worth of challenges from the start. Diagnosed at birth with transient myeloproliferative disorder (TMD), a form of leukemia common in babies with Down syndrome, she endured her first round of chemotherapy just two days later. And Grace – whose family is always at her side – spent her first two months in the hospital’s Neonatal Intensive Care Unit (NICU).
According to Seth Rotz, M.D., a pediatric oncologist at Cleveland Clinic Children’s who has treated Grace, children born with Down syndrome bear a higher risk of later contracting acute myeloid leukemia (AML), a more serious cancer of the blood and bone marrow. That is exactly what occurred in August 2017, prompting Grace and family to begin their eight-month inpatient journey.
“Although AML is a curable form of leukemia for kids with Down syndrome, their bodies are extremely sensitive to chemotherapy,” explained Dr. Rotz. “Grace was at such a risk for severe infections that she had to stay hospitalized throughout her treatment.”
Complicating matters was the fact Grace’s AML was also found in her spinal fluid, an extremely rare occurrence that added further rigor to her treatment plan. Grace received 10 spinal tap procedures, in which the chemo was administered directly into the spinal fluid; typically, a child with AML might only need two.
“Even when her body was battered by infection or the effects of chemo, Grace took the treatments like a champ,” added Dr. Rotz. “All the nurses and everybody here just loved her.”
Valerie noted that despite the unusual circumstances, Cleveland Clinic staff treated Grace, brother Robert and everyone in her family like, well, their family.
“I don’t think there was a time when somebody came into her room that they didn’t also acknowledge my son,” she stated. “And they never left without asking if there is anything they could do for us. Little things like that make a huge difference when you’re stuck living in a hospital.”
Now, at last, home for Grace and family is once again their house in Strongsville. She was given a proper send-off from Cleveland Clinic Children’s, with staff lining the hallway where Robert once raced, cheering and wishing them well as Valerie wheeled Grace – shrouded in balloons and smiling, as usual – out the door.
“We’re extremely blessed to be home,” exuded Valerie.