Kyle had a golf ball-size lump on his lower left leg. The nurses and doctors quickly realized he needed to be seen by a specialist. Before Erin even had a chance to bond with her new baby, he was transported by ambulance to the neonatal intensive care unit at Norton Children’s Hospital.
Once he arrived, Kyle underwent a battery of tests. “He was so upset in those first few days, as the tests often interfered with his normal feeding schedule,” Erin said.
Those tests led doctors to an answer. At 1 week old, Kyle was diagnosed with rhabdomyosarcoma, a form of cancer that usually forms in muscles that are attached to bones.
“We couldn’t believe it. He was so young,” Justin said. “We wondered how it was possible to be born with cancer.”
Shawn L. Price, M.D., orthopaedic oncologist with Norton Cancer Institute, cares for kids with bone and soft-tissue tumors at Norton Children’s Hospital. He delivered the tough diagnosis and said
Kyle was the youngest patient he had seen with this form of sarcoma.
Dr. Price explained that the tumor involved the important nerves and blood vessels in Kyle’s leg and that it had created a mass effect on the tibia, causing it to be deformed. He discussed options for chemotherapy or amputation. After collaborating with a multidisciplinary tumor board, Dr. Price did not feel chemotherapy would shrink the tumor enough to allow preservation of the nerves and blood vessels.
His recommendation was amputation through the knee.
In the months following his surgery, Kyle underwent 22 rounds of chemotherapy to ensure he was cancer-free. After several imaging tests came back showing no cancer, Kyle was declared in remission in November 2013.
Yet all that he’s been through hasn’t delayed Kyle’s development. He has mastered crawling and even tries to stand with one leg. “I was afraid he wouldn’t progress like he should, but he started crawling earlier than many babies and hasn’t slowed down since,” Erin said.
Kyle recently received his first prosthetic leg, which intentionally doesn’t have a knee joint, to get him used to standing and putting pressure on it. Once he is ready to start walking, he’ll receive a new prosthetic with a knee joint.
Erin has embraced the prosthetic and is teaching Kyle to be proud of it.
“I never want to let it hold him back,” she said. “I want him to play sports or do whatever activity interests him. I plan to encourage and support him in everything he does.”
That support began before Kyle ever left Norton Children’s Hospital.
“My husband and I were amazed by some of the special things Norton Children’s Hospital allowed us to participate in,” Erin said. “His ‘end of chemo’ party was a great celebration of our journey and the first day of the next chapter in Kyle’s life. We thank God for the blessings we received through all of this. It was our faith in God that got us through.”
Other milestones for young Kyle included the day his medication port was removed; attending the “Just for Kids” Radiothon, which included a private concert by The Fray; and getting his first prosthetic.
“Throughout this entire journey, all those we met have been amazed at Kyle’s consistently happy attitude,” Erin said. “He has been happy during times when none of us can imagine being happy — and his happiness is contagious! We are sure that he is a special little boy who now carries a special message everywhere he goes. He was born this way and was meant to be an inspiration to everyone he meets.”
Why do kids get cancer?
Cancers that develop in children are often different from cancers that develop in adults. Childhood cancers are usually the result of DNA changes in cells that take place very early in life, sometimes even before birth, such as in Kyle’s case. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors.
Rhabdomyosarcoma accounts for about 3 percent of all childhood cancers, so it’s relatively rare. It is a cancer made up of cells that normally develop into skeletal muscles. We think of our skeletal muscles as being mainly in our arms and legs, but these skeletal muscle cancers can start nearly anywhere in the body.
About seven weeks into the development of an embryo, cells called rhabdomyoblasts (which eventually form skeletal muscles) begin to form and can develop into rhabdomyosarcoma. Because this is a cancer of embryo cells, it is much more common in children, although it sometimes occurs in adults.
Most children with rhabdomyosarcoma can be treated successfully. Since the 1960s, most children and teens with cancer are treated at specialized centers designed just for them. The Addison Jo Blair Cancer Care Center at Norton Children’s Hospital is one of those centers. It offers the advantage of a team of specialists who know the differences between adult and childhood cancers as well as the unique needs of children with cancer. This team includes pediatric oncologists, surgeons, radiation oncologists, pathologists and pediatric oncology nurses. The hospital also has psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators who can support and educate the entire family.