Caring for a Chronically Ill ChildWhen JoAnne Colucci meets other third-grade moms in the parking lot waiting to pick up their kids after school, she’s used to hearing them discuss discipline problems or the typical childhood maladies like chicken pox or stomach flu. In contrast, the Palatine, Ill. mom speaks of intravenous tubes, the side effects of chemotherapy, multiple medications and her hopes that the school year will be free of extended hospital stays.
Her situation speaks volumes about what it is like for parents whose daily lives include caring for children with chronic illnesses.
Colucci’s daughter, Rosie, 8, was three when she was diagnosed with multiple conditions: Neurofibromatosis, a genetic disorder that causes tumors to grow in the nervous system, an inoperable brain tumor and obstructive hydrocephalus. Rosie also suffers from a half a dozen chronic conditions. In the five years that have followed, she has had 142 doses of chemo, and 13 surgeries. Rosie sees 13 specialists and has missed 70 days of school in first and second grade alone.
“I sat by her bedside alone in the MRI suite, knowing what they were looking for, a brain tumor, and I knew what could be coming next,” remembered Colucci. “But nothing could have prepared me for the wall of emotion that hit me when a team of three doctors approached me.”
Lurie Children’s Hospital of Chicago, more than 35 miles away, would become Rosie and her mom’s second home.
When a child is chronically ill, the whole family feels the pain. Colucci tries not to talk about the stress on her family or the guilt, anger and sheer exhaustion and how some days she just feels like a machine, pushing ahead to keeping going.
“It’s very hard when you have a sick child,” she says. “It drains the family emotionally and financially. You are at the hospital all day with one kid and then you come home to your other child who needs attention too.”
Rosie’s 11-year-old sister Bella talks about the impact Rosie’s cancer has had on her life: “I have had to watch her lose her hair at the age of three and again at five,” she said. “I have seen her so sick and weak, I thought she would die. I have seen her throw up day after day. I have waited for her to come out of surgery and have laid with her before she went in (she has had 13 surgeries already and I know there are more to come); she is very brave. I have woken up in the middle of the night to find out my Mom had to rush my sister to the hospital, or woken up to find out they had already left during the night. I have gotten home from school to be greeted by a neighbor or one of my parent's friends because Rosie had to be admitted into the hospital. I never know just how long they will have to stay.”
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