8-Year-Old Belfast, N.Y., Girl Determined to Beat Bone Cancer
January 23, 2002
Chemotherapy treatments, surgery to replace the hip, femur, and knee, and countless trips to Rochester from Allegany County would leave many without hope, but not 8-year-old Alexandra McCumiskey.
Alexandra was diagnosed last fall with osteosarcoma, or cancer of the bone. She is in the midst of post-operative chemotherapy treatments means she is in the home stretch of a lengthy healing process. As part of its Miracle Weekend celebration June 1-2, Golisano Children's Hospital at Strong is honoring five children - including Alexandra - as Miracle Kids. Each overcame significant health problems while being treated at Golisano Children's Hospital.
Amanda and Patrick McCumiskey remember last summer when their daughter complained about leg pain. After she experienced severe pain during the night, they took Alexandra to Paul Axtell, M.D., an orthopedist in nearby Wellsville, N.Y.
"My husband asked the doctor, 'What about her night pains?' and he just froze," Amanda says. "He immediately ordered a new set of x-rays. I asked Patrick, 'What if she has cancer?'" Amanda's fear was confirmed minutes later, when Axtell returned with the films. "He brought in an X-ray of the femur and said, 'Do you see that waviness? I'm 90 percent sure that it's one of two kinds of bone cancer.' We were absolutely shocked."
Alexandra's parents immediately weighed treatment options. Axtell encouraged them to take Alexandra to see Randy Rosier, M.D., chief of the division of orthopaedics at Golisano Children's Hospital at Strong.
The McCumiskeys weren't convinced that going to Rochester was the right decision. "We really felt like Strong was too small," Amanda says.
"We wanted to go to The Cleveland Clinic or Johns Hopkins University. During our research, we had contact with people at medical centers throughout the country, and they all told us, 'We can treat her here, but why don't you go to Strong?' Without us even bringing up his name, they mentioned Dr. Rosier and his reputation, and we knew we were in the right place."
After consulting with specialists at Golisano Children's Hospital, Alexandra started chemotherapy treatments designed to shrink the size of the tumor. Several months later, she was ready for surgery. Rosier and his colleague, Ed Fox, M.D., also a bone- cancer-specialist surgeon, performed extensive limb-salvage surgery on Alexandra.
During the 12-hour operation, the surgeons removed Alexandra's thigh bone (femur), including her hip and knee joints. In an effort to restore her leg function as much as possible, they gave the third-grader a total metal femur, which reconstructed her hip, thigh, and knee bone. The metal femur was made especially for her. Using a special internal mechanism, the metal femur will allow for the lengthening of her leg as she grows. "This is one of the modern marvels of orthopaedic-oncology surgery that we perform here at Golisano Children's Hospital," Fox says.
Now, Alexandra is finishing a series of chemotherapy treatments designed to rid her body of any remaining cancer cells. Michelle Gullace, a pediatric nurse practitioner at Golisano Children's Hospital who plays a big role in Alexandra's treatment, raves about the youngster. "Alexandra is a great kid who does whatever I ask her to do to help with her recovery," Gullace says. "She is very well liked, always has a smile on her face, and is a delight to care for. Alexandra is also a very informed patient. She asks questions so she understands why we have to do certain things during the course of her treatment. She's a model patient."
In early April, two months after her surgery, Alexandra stood for the first time. She continues to receive physical therapy to help regain her mobility. In the meantime, she keeps busy with her schoolwork - her mom, a teacher, is tutoring her at home - and she recently finished the nine-book Laura Ingalls Wilder series.
An outpouring of support from the McCumiskey's community helped Alexandra, her parents, and two brothers remain upbeat. Six days after she was diagnosed, the family car was stolen. In response, a local dealership, Preston Chevrolet, gave the family a minivan. Several weeks later, the community rallied around Alexandra at a benefit fund-raiser. More than 3,000 people attended the event in Belfast, N.Y., a number exceeding the town's population.
"During the few weeks after the terrorist attacks, people were so down on humanity," Amanda says. "After our experience, I've never been so positive it."
Miracle Weekend Celebration
Miracle Weekend is always one of the most exciting times of the year for Golisano Children's Hospital. It includes two major events.
The Golisano Children's Hospital Telethon will be broadcast live on 10NBC June 1-2. The telethon will be held at the hospital. In addition, Miracle Weekend always includes the Stroll for Strong Kids, to be held at 11 a.m. Saturday, June 1, at Genesee Valley Park. Everyone is invited to participate in the scenic two-mile walk. When finished with their "Stroll," walkers will be treated to a free lunch provided by Outback Steakhouse. There will be music by Gary the Happy Pirate, and many fun activities for the kids.
Participants are asked to raise money through sponsorship pledges from family members, friends and co-workers. Those who raise $75 or more in pledges will receive a commemorative t-shirt, and prizes will be awarded to the top fund-raisers. Last year, some 800 people took part, raising more than $80,000 for Golisano Children's Hospital. Pre-registration is required. To register for the Stroll for Strong Kids, or learn more about any Miracle Weekend event, call 585-273-5948.
In addition to honoring children such as Alexandra, Miracle Weekend allows the hospital to raise funds that provide needed equipment for the children it serves, and items that make their stay a little easier.
Money raised will be used by Golisano Children's Hospital to buy equipment, such as preemie blood-pressure cuffs, and supplies that make hospital stays easier, such as IV pole wagons, videos and games, and sleeper chairs so parents have a comfortable place to rest when they stay with their children.