Cover Story - Roselia
“Friends of Karen is an answered prayer.” — Roselia’s mom
It is hard to imagine that at less than a year old, Roselia battled a rare form of liver cancer and has undergone a liver transplant. Her infectious smile and giggling are in sharp contrast with the difficulties she and her family faced in a short time.
Soon after birth, it was discovered Roselia had liver cysts, and when she had her first surgery attempting to remove them, doctors discovered most of the cysts were inoperable and she would need a liver transplant. Then, scans and pathology tests revealed the cysts contained cancerous cells called hepatoblastoma. Her father, Leo, was a match for Roselia, so he donated part of his liver for the transplant.
“Fear consumed me at that moment she was diagnosed,” her mother Rachel said. “I’ve lost several family members to cancer and all I could think about was ‘the what ifs’ and how this would affect the four of us and my extended family.”
Rachel was connected to Friends of Karen because she had mentioned in passing to the oncology nurse that before every hospital visit they left the house an hour early just to look for street parking. They were parking on the street because paying for a parking lot had become a challenge since they came to the hospital several times a week and New York City parking can range from $30 to $50 a day.
Rachel called to see what help was available and she was soon meeting with Friends of Karen social worker Beth. Beth started helping by reviewing their monthly budget, since they were now living on one salary as Rachel left her job to care for her family.
Friends of Karen conducts this review as part of a comprehensive assessment with all families with a seriously ill child, because this major life event puts them at risk for financial hardship. Beth’s assessment identified that the parking expense was just one of several critical concerns. The family’s health insurance had been through Rachel’s job, and that meant they also needed help with their monthly COBRA insurance premium, as well as other illness related expenses.
The assessment also covers any emotional struggles the family might have, and Rachel asked for help speaking with Roselia’s toddler sister, Liana, about all the major changes in the family’s daily life. Friends of Karen sibling support specialist Melissa brought great peace of mind to the family.
“I was thinking how Roselia’s cancer would affect all of us and it’s been an immense relief having Melissa to coach me on the best ways to speak with Liana about what was going on,” Rachel said.
Rachel readily admits it was tough at first to accept the help, but she sees how it has enabled her to worry less and spend the time she needs with her family. Friends of Karen even helped the family keep up holiday traditions they thought would have been impossible.
“I never thought the sight of wrapping paper would bring me to tears, but Friends of Karen thinks of everything,” Rachel said. “I was so happy we could celebrate the holidays, because there was no way I’d have had time to shop for Thanksgiving or Christmas, and they provided all we needed. Friends of Karen is an answered prayer.”
Ways to give
Bring critically ill children and their families the HOPE they deserve all year long. As a Guardian of Hope, you Donate Monthly. With your help, children will receive the emotional support they need
Leave your imprint to benefit future generations. Naming Friends of Karen in your estate plans will continue to impact the lives of critically ill children and their families well into the future.