Long Road to Recovery
“It’s just stuff that happens and nobody can know why it happens” said Felix Modestin, when his son Nicholas at age 2 was diagnosed with Acute Lymphoblastic Leukemia, a common form of childhood cancer. Still the news of the diagnosis and anticipation of the long treatment road ahead were overwhelming. Nicholas and his parents would face many difficult physical, emotional, logistical and financial challenges on the road to recovery.
Like many families face at the beginning of their child’s treatment for cancer, the Modestin’s spent most of their time at the hospital. “At the beginning of treatment, that’s when you go to the hospital a lot. You go day after day after day.” said Felix. “The most important thing that helped us as parents while Nicholas was in the Brooklyn Hospital Center for a month, was his strength and his willingness to beat his cancer. With all the medications, injections and two surgeries, he always had a smile and an upbeat attitude.”
However, the demands on Nicholas’ parents’ time associated with his care and treatment soon led to reduced household income. Nicholas’ mom, Adriana, had to quit her job to be there for Nicholas, and the family had already experienced a financial blow when Nicholas’ dad was laid off from a full-time position as a photo editor with a sports magazine prior to Nicholas’ diagnosis. With a part-time job as a sports writer/reporter and freelance jobs with a few organizations, Felix did his best to support his family financially as well as be available for Nicholas’ care and treatment needs. However, when one of the companies moved to another city in the winter of 2009, one of Felix’s positions was eliminated. “That’s when I started going from job to job….. I’m job-hunting all over the place and we went from having a bigger budget to a smaller budget” This forced the family to ask the questions –“What’s important? What’s not important?”
The Modestin family also faced additional challenges early in treatment which impacted their financial situation. Nicholas developed Acute Leucoencephalapathy, a rare side effect of treatment. This condition caused severe muscle weakness which left Nicholas unable to stand or walk for several months and was one of the low points experienced by the family during the treatment process. “I never knew it was going to be so devastating to see my own kid that bad. I thought the cancer was bad but to see him when you had to carry him to everything. That’s the four months I stopped job hunting because my wife couldn’t pick him up. We had to drive four days a week back and forth to the hospital for chemotherapy and rehab. He was just solid as a rock. Nobody could lift up Nicholas,” Felix described sadly
During Nicholas’ treatment, things became very tight financially for the Modestin family, especially during the summer months. Thankfully, Felix’s part-time jobs along with a grant from Family Reach, helped to keep the family afloat. Family Reach assisted with a monthly rent payment which provided much relief. “We were ecstatic and happy (to receive the grant) because the summer months kill us because my substitute teaching is done.” Additionally, Family Reach later assisted the family by providing a grant for a security deposit to help them secure a more affordable place to live.
Nicholas has since since learned to walk again thanks to a strict regimen of physical and occupational therapy and the support of his mom and dad. His strong family has been able to stay positive and move forward through the cancer storm to the point of recovery. Nicholas, who will be in first grade this September, has completed treatment and is doing very well.