Luis, Diagnosed at 4, Osteosarcoma

Because complaining was not typical behavior for Luis, his mother Delia was particularly concerned that warm April morning in 1998 when her young son said his right leg was hurting. An X-ray at the pediatrician’s office in southeast Houston pinpointed the culprit.

“The doctor said, ‘Look, he’s got something on his bone,’ ” Delia remembers. “I saw a big white mass about the size of a baseball. Then he said, ‘Go right to Texas Children’s Hospital. Don’t even go home.’ ”

Delia was quick to heed the doctor’s advice. The next few hours were filled with additional exams and X-rays at the nation’s largest pediatric specialty hospital.

“At the time, I had never heard the word ‘oncology’ but I noticed it on several name badges,” Delia says. “When I asked a doctor what it meant and understood that Luis might have cancer, I almost fell to the ground in a panic. Luis was admitted that night for more tests.”

A biopsy revealed the mass was osteosarcoma, a rare bone cancer that most often occurs in teenagers. Doctors explained that radiation would not work on this type of tumor and advised chemotherapy. Unfortunately, only five weeks after starting the treatments, an X-ray revealed Luis’ tumor had almost doubled in size. His pain also had increased.

“We had no other choice but to have his leg amputated above the knee,” Delia recalls. “To have to tell a 4-1/2-year-old that his leg is going to be cut off is extremely difficult, but he actually took the news better than we did. The child-life specialist at Texas Children’s Hospital helped him accept the inevitable.”

In addition to medical expertise, Texas Children’s Cancer Center also offered moral support.

“It’s really true that the staff at Texas Children’s is like having another family,” Delia says. “In the beginning, we were so scared, but everybody made us feel really good. They are all very concerned and child-oriented. There’s lots of love and hugs for the children. They know all the kids — not just Luis — by name.”

After his operation in June of 1998, Luis continued chemotherapy at Texas Children’s. In August, he started kindergarten in a special program at the hospital. Once he returned home, a teacher visited him for one-on-one instruction, and by first grade he was able to attend regular classes in elementary school. Even so, Delia and her husband, Franco, expected that natural reactions from classmates might squelch Luis’ enthusiasm.

“We told him people might stare or say things, but we must understand that cancer is a part of our life now,” she says. “It really helped when a child-life specialist from Texas Children’s visited his school and spoke about Luis, who showed the kids his new prosthesis and how he could even turn his leg backwards.”

One of the year’s biggest challenges occurred during his class field day. Because he wanted so desperately to compete, Luis had worked with the physical therapist at Texas Children’s to prepare for the annual event.

“Luis looked forward to the activities so much, but as I watched him participate in the 50-yard dash, I saw his face go from happy to real sad,” Delia says. “The last event was the three-legged race, so I asked the coach if Luis could remove his prosthesis and let his crutches become his other two legs. Of course, he beat everyone and won a ribbon for first place. There was lots of applause, and he had the biggest smile when the coach said, ‘You smoked them, Luis.’ ”

Luis is now an energetic child who enjoys basketball and even learned to ride a bicycle — not an easy feat because the strength for pedaling must come from his hip.

Although chemotherapy was finished in January of 1999, Luis visits Texas Children’s every few months for tests.

Even though Luis has a clean bill of health, Delia is a member of Candlelighters, an organization that helps parents of children with cancer. Her Spanish-speaking skills are especially appreciated.

“I want to be there for other parents if they want to talk,” she says. “I know what it’s like to be frightened and wait for test results. You have to have had a child with cancer to understand the experience.”