Sweet Relief

Where does a family turn when their son is given a zero percent chance of survival?

by Elizabeth Jane Walker

Sweet relief

When Chris and Ginger Braun discovered that their infant son had a brain tumor, they were overwhelmed—not with terror or dread, but with a feeling of relief.

“You probably don’t hear many parents say that it was a relief to be told their child has cancer,” Ginger says, “but Carson was almost lifeless. He was 1 year old and couldn’t hold his head up. We had been trying for months to find out what was wrong.”

Carson and his twin, Cameron, were born prematurely in February of 2003. In the fall of that year, Carson began having frequent bouts of crying and vomiting. After visiting the pediatrician three times in one week, the baby underwent a CAT scan at a hospital in Louisiana.

“First, they told us that he had a huge brain tumor and probably wouldn’t make it,” Ginger recalls. “Then they told us that it was probably a birth defect. They even sent the scans to other hospitals to try to get a diagnosis. We got nothing, nothing, nothing.”

Doctors inserted a shunt to remove fluid that had accumulated in Carson’s brain and sent him home. The day after the twins’ first birthday, his condition took a turn for the worse.

“He wouldn’t wake up; he was pretty much lifeless,” Ginger says. “We rushed him to the hospital, where they put him in the ICU and told us they didn’t know whether he would make it or not.”

This time, a biopsy indicated that Carson had a type of malignant brain tumor called nodular medulloblastoma.

“By that point, he was like a newborn baby,” Ginger says. “He couldn’t eat or hold his head up, and he only weighed 15 pounds.”

Lifesaving treatment

The Brauns learned that St. Jude Children’s Research Hospital had a treatment plan that might save their son’s life.

“The doctors told me, ‘He has a 30 percent chance of survival,’ and I thought, ‘Great! Thirty percent is fantastic when I’ve been told that he has a zero percent chance back home,’” Ginger recalls.

She and her husband already knew a little about St. Jude before arriving in Memphis. Soon after their marriage, Chris and Ginger had begun buying tickets for the St. Jude Dream Home® Giveaways in their area.

“We had heard about the hospital and wanted to support it by buying one of those tickets,” Ginger says, “but we never imagined that we would have to take one of our children there.

“We were scared to death to walk through the doors of that place,” she continues. “It was so overwhelming, but they took good care of us from the first moment. My biggest concern was my family. I said, ‘I can’t do this without having both of my kids with me. Can Cameron come, too?’ and the people at St. Jude said, ‘Yes, we strive to keep families together.’ What a relief that was.”

In February of 2004, neurosurgeon Robert Sanford, MD, removed the tumor, which was the size of a large orange. Carson received 20 weeks of chemotherapy, including some treatments administered directly into the fluid surrounding his brain and spinal cord. That regimen was followed by five weeks of radiation therapy and 20 additional weeks of less-intensive chemotherapy.

Once Carson completed his treatment, he faced extensive therapy to gain skills that he had not yet developed. Because he had been so weak and sick during his first two years of life, Carson had not learned how to eat solid food. When he was 3 years old, he began eating pudding and banana baby food.

“He didn’t like the texture of food,” Ginger explains. “It was a long process and took lots of therapy to get that child to put anything in his mouth.”

Benefiting from progress

During a routine checkup in January of 2011, Chris and Ginger learned that their son had developed a second cancer—a tumor unrelated to the medulloblastoma. This time, he had a grade II meningioma, a slow-growing brain tumor that originates in the meninges, the membranes covering the brain and spinal cord. As they grow, meningiomas can compress adjacent brain tissues.

“It had been six years since his original diagnosis. You never think this is going to happen,” Ginger says.

The Brauns discovered that surgical technology had improved significantly since Carson’s first bout with cancer. Neurosurgeon Frederick Boop, MD, now had access to a new imaging technique called intraoperative MRI (iMRI).

In the past, surgeons removed only the tumor that they could see; afterward, the patient would receive an MRI to determine whether the entire tumor had been removed. The iMRI, however, enables a surgeon to examine the tumor and confirm its successful removal while the patient is under anesthesia. If any additional tumor remains, it can be removed immediately.

“We have a computer system that allows us to do an MRI before surgery and build a 3-D computer model of the child’s brain and his tumor,” Boop says. “We can point to a location on the model and it shows us where we are inside the brain. So if we have a tumor that’s deep in the brain and the surface looks normal, we can use that system to tell us what the best trajectory to the tumor is. We used that process on Carson.”

Oncologist Ibrahim Qaddoumi, MD, says the 8-year-old’s prognosis is good. “Because we were able to remove the entire tumor, the chance of the meningioma returning is low. Survival is not an issue anymore. Now we’re concentrating on further improving his quality of life.”

Windows on the world

One sunny Saturday morning seven years ago, Chris, Ginger and their sons gazed out of the hospital window as thousands of people ran past the campus during the St. Jude Memphis Marathon and Half Marathon. “For hours, runners streamed by,” Ginger says. “I was amazed. I thought, ‘Wow—all of these people are doing this for the kids!’ I said, ‘I can do that. I am going to do it.’”

Carson completed his treatment the following March. In December of 2005, Chris and Ginger laced up their running shoes and competed in the 5K race that is held in conjunction with the marathon. Participation in that event provided Ginger with further inspiration.

“When I got to the finish line and saw the half-marathon runners, I said, ‘I can do more than this for these kids. If they can endure the treatment and the days of being so sick, I can run a half marathon. I am going to do it.’”

And so it began. In December of 2011, Ginger once again laced up her shoes and participated for the seventh consecutive year. Her goal? To raise $10,000 for the hospital that saved her child’s life.

“We want to give back because they gave so much to us,” she explains. “Most people know that St. Jude provides treatment, food and housing, but they don’t know about the little behind-the-scenes things, like the gift cards that we used to buy groceries; like the fully furnished apartment at Target House, which included two brand-new cribs and a Pottery Barn changing table for the twins. We had everything we needed to take care of both of our kids and to make sure that we could stay together as a family.”

On the run

Today, it’s hard to believe that the active and cheerful second-grader ever struggled to attain basic milestones.

“Carson is a social butterfly. He makes friends easily, and everybody loves him,” observes his mom. Fascinated by computers, Carson spends hours playing computer games. He also enjoys swimming and riding his bike. Ginger attributes Carson’s achievements to sheer determination.

“He’s headstrong,” she says. “His attitude is, ‘By golly, I can do it, and you are not stopping me.’ At one point, the doctors warned us that he might never be able to sit up on his own. Today, he runs.

“Carson is truly a miracle,” she continues, “and it’s all because of St. Jude.”

Promise magazine, Winter 2012

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