When the Fortin family from North Carolina -- Steve, Maureen, and their three children -- attended the Inheritance of Hope Legacy Retreat® at Disney World in January 2011, Steve was in good health.
“He often says he feels funny because he was the healthiest sick person there,” Maureen said.
Steve uses a prosthetic leg after an amputation due to a sarcoma tumor.
By the time of the Legacy Retreat® his chemotherapy, surgeries, and rehabilitation were finished, and Steve said he felt different from retreat attendees who faced physical challenges. However, Steve and Maureen said the retreat addressed needs that developed over a year of cancer treatments.
“There’s still a part of me that feels guilty for the fact that I took somebody’s spot on the trip down there, but I forget that the trip was for the kids,” Steve said. “I guess it’s for everybody. It wasn’t just me.”
A biopsy in December 2009 discovered a malignant tumor in Steve’s leg. He began chemotherapy the next month after scans revealed spots in his lungs. The first surgery on Steve’s leg removed a football-sized tumor wrapped around his quadriceps muscle, part of his hip, and pieces of the femur bone while preserving the leg. However, on Mother’s Day 2010, an infection and intense pain required Steve’s leg to be amputated.
Steve continued receiving chemotherapy for several months after his amputation, but he recovered well, aside from feeling fatigued.
“The most amazing thing was the day after my surgery I wanted to get up and walk around, which I thought was ludicrous,” Steve said.
Yet cancer treatment took its toll in the time the Fortin family spent in and out of hospitals. Steve said his extensive stays in hospitals were among the most difficult parts of his cancer treatment. Although his physical rehabilitation was divided into manageable segments, he said being transported to different facilities and meeting new doctors was challenging.
“Being away from home was hard to deal with,” Steve said. “Everything took getting used to, and I got really tired of being in the hospital.”
Steve spent ten weeks in different hospitals for his treatments and therapy. Maureen visited her husband all but three days during that time. As a mother and Steve’s caregiver, Maureen said she worried about money, her kids, and the medical questions related to her husband’s condition.
“We were worried about day-to-day struggles that you normally worry about, but they were intensified,” Maureen said. “I felt really torn because I needed to be with the kids, but I needed to be with Steve too.”
Maureen said the Inheritance of Hope Legacy Retreat® offered her family the opportunity to relax after months of stress and to meet other inspirational people. The Fortins explored Disney World as a family during the retreat and made lasting friendships with other attendees. They met and shared stories with other families dealing with life-threatening illnesses, and Maureen said she still exchanges emails with those friends more than a year after the retreat.
“We didn’t have to worry about bills; we didn’t have to worry about medicine; we didn’t have to worry about the day-to-day family life. I got to hang out at Disney with my kids,” Maureen said.
Although Steve has enjoyed good health since the Legacy Retreat®, the Fortin family took inspiration and strong memories from their weekend at Inheritance of Hope. Maureen said she started journaling for her kids after learning ways she can leave a legacy at the retreat.
Maureen said her children were understanding of their father’s amputation, as long as he could come home and be a dad. After operations and rehabilitation, Steve can play basketball with his boys. Although he did not face the same physical challenges as some other attendees at the Legacy Retreat®, Steve recognizes how the experience served his family.