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BR Parents: Thrive - Powering Through While Beating Rare Bone Cancer

Originally published in the January 2021 issue of Baton Rouge Parents Magazine and on its website.

Although 2020 was a hard year for everyone, the White family’s experience was extra challenging. 

Their eight-year-old, Hayden, was diagnosed with osteosarcoma. His victory over the rare bone cancer was complete when he finished chemo on December 11, one of the first in-patients to do so at Our Lady of the Lake Children’s Hospital. 

“Hayden started having leg pain probably in February,” says his dad, Corey. An X-ray in March led to consultations with orthopedists and soon thereafter an orthopedic oncologist, and chemo began in April. “It happened really fast,” Corey says.

Hayden’s mom, Karen, says, “From the time we saw the pediatrician to the time we started chemo, it was about three weeks.” 

COVID-19 complicated everything, with only one parent being allowed with him during some of Hayden’s procedures. Karen and Corey were even told separately about their son’s diagnosis. They would switch off which parent stayed in the hospital and who stayed home with Hunter, four. 

The White family does have grandparents who live nearby who can help with childcare, but early on they managed alone to help minimize everyone’s exposure to COVID-19.

Hayden completed eight months of chemo as an in-patient, with a break for surgery on July 11 to remove the tumor in his leg. “The (chemo) regime he (was) on is pretty hard to tolerate,” Karen says. “He pretty much lived in the hospital.” Although Hayden doesn’t like the way it makes him feel, “he never complains about having cancer or getting chemo.”

In between rounds of chemo, Hayden would get to go home for a few days, but there were further challenges even then. 

“He would start getting really weak and basically pass out,” Corey says. “One time, we went by ambulance to the ER because he had passed out. We’ve been able to avoid doing that lately because they now send him home with IV fluids,” which have helped resolve those episodes of faintness.

After the successful tumor-removal surgery, doctors reported clean margins and 100 percent necrosis, which are both positive outcomes. 

Hayden’s medical journey is far from over, though. His surgery also included installing a growing prosthesis, a rod in his leg that will need to be lengthened as he grows. 

The prosthesis can grow four millimeters at a time, so Hayden has to have the leg lengthening procedures frequently, at least monthly. The procedure comes with a lot of discomfort, as his leg gets tight and sore. Hayden will need at least one prosthetic replacement as he grows and will wear a brace every night for at least 10 years. “He will probably have three or four more surgeries,” Karen says. 

In addition to the leg-lengthening procedures and surgeries, Hayden’s future will also include physical rehabilitation and regular scans to check for recurrence of the cancer. 

“All of that is going to be nerve wracking,” Corey says. “Every time he goes for a scan, we’re going to be holding our breath.”

Having access to world-class care close to home has made such a hard experience easier for the Whites. “Normally, you’d be traveling to Memphis,” Corey says. “But having a local affiliate (at OLOL Children’s Hospital), it was a real blessing. Besides the blessing of Dr. (Shaun) Accardo, the nurses and the staff are excellent. In fact, it’s a home away from home for us. We’ve spent so much time there.”

A third grader at Galvez Primary in Ascension, Hayden keeps up with his classes as a homebound student. He loves 1000-piece puzzles, LEGOs, Hot Wheels, and participating in activities with Child Life at the hospital like bingo. Before the diagnosis, he was very active. He was always running, riding his bike, swimming, and playing soccer and baseball. 

“We think he will be able to run,” Corey says. “But it’s going to be a little awkward” because his left leg will grow differently and more slowly than the right. 

Hayden has kept a positive attitude throughout it all, amazing his parents and medical staff involved in his care. “He’s just powered through all of it,” Corey says. “It doesn’t get him down. He continues to play and be as active as he can be. He’s just limited by his endurance right now.”

Although COVID-19 limited the family’s ability to celebrate the end of chemo and Hayden’s clean scans, they are grateful. “We are thankful because we see a lot of other kids who may not be having the same journey,” Karen says.