A father’s story: Embracing Support When Things Got Tough
Celeste is 3 and 1/2-years-old and in the maintenance phase of treatment for Acute Lymphoblastic Leukemia that was diagnosed in October 2022. Her father Rafael shares how he and his wife Gwen coped through Friends of Karen’s support.
“Everything was going well for us. We were expecting a new baby and we decided to send Celeste temporarily to my parents’ house before the baby’s arrival. Things got very difficult very fast. Our new son, Mael, was born early via C-section and Gwen was recovering in my care while we were nursing our son from the Neonatal Intensive Care Unit (NICU) at Jamaica Hospital. In the meantime, Celeste had developed a slight limp while in the care of her grandparents, which was showing no signs of letting up and quickly worsening. Unlike many kids her age, Celeste was rarely sick, so when my parents told us she was looking pale and limping we thought maybe it was a bit of separation anxiety or an injury from roughhousing with her cousins.
The orthopedist was unable to find anything to worry about, nor did the general physician. We didn’t think much of it, until my mother informed me Celeste was pale and unwilling to walk or eat. Then, she developed a mild yet unrelenting fever. We flew her back earlier than planned as a precaution. When she arrived at the airport in my mother’s arms and unable to stand, we quickly knew something was really wrong. Celeste had developed bruises and complained of pain everywhere. We thought she might have an infection from a potential knee or hip injury, and we were shocked when she was diagnosed with Leukemia. This was just five days after my wife gave birth and now our children were in two different ICUs in two different boroughs of New York City. I quickly found myself shuttling from one hospital to the other, while also taking care of my wife. It was all a whirlwind of meetings about the children’s care, and it was hard to retain all the information. Fortunately, the social worker at the hospital introduced us to Friends of Karen a few weeks after Celeste’s diagnosis. Our Friends of Karen social worker Rhonda has been available whenever we need her, and she has helped support us emotionally. I have participated in Friends of Karen’s online group for parents of newly diagnosed children. It’s helpful to speak with other parents who understand our situation.
My wife and I both work in the hospitality industry and with her maternity leave and Celeste’s illness, I worked when possible. The loss of income has meant we needed Friends of Karen’s financial support to pay some bills like our rent, which allowed us to breathe easier and set aside a lot of worries. Things have improved quite a bit since those dark days in 2022. Celeste is doing better and in partial remission. Gwen and I are back at work and only need to take time off for the kids’ doctor appointments.
We are thankful that Friends of Karen got us through a tough year. Gwen and I don’t have much family in the United States and Friends of Karen has come to feel like an extension of our family. Without Rhonda we would not have fully understood much about Celeste’s treatment and what the experience would be like for our family. It would have been an even more stressful time.” – Rafael