All Children's Hospital Telethon

Faith

Faith was such a healthy baby-over nine pounds on the day she was born. A year later, she could barely sit up. Faith weighed just 13 pounds, and her parents were at their wits' end trying to determine why she vomited every time she was fed. Countless doctors' visits and tests at a local hospital yielded lots of possibilities but no real answer.

Two weeks before her first birthday, doctors finally told Faith's parents that she had a cancerous tumor on her brain stem. Worse still-it was inoperable.

"They told me I might not see my daughter live to be two years old," recalls dad Jamaal. "When they gave us that information, it was like - 'what?!' We'd need a second, third and fourth opinion-because there was no way we could accept that."

One of their first stops was All Children's Hospital, and the office of Dr. Stacie Stapleton, director of All Children's Pediatric Neuro-Oncology Program.

"Brain tumors in children that age are very rare," Stapleton explains. Faith's tumor, a low-grade astrocytoma, was situated in the back of the brain near the medulla. "When tumors are in the brainstem, they can exert extra pressure or irritation, and can cause vomiting. But depending on the diagnosis, it can sometimes be treated with chemotherapy. Fortunately, Faith has the type of tumor that can be treated this way.

"I clearly remember meeting Faith's parents for the first time, and how irritable and thin Faith was. They feared that nothing was going to work. Even though I discussed with them the success rate of chemotherapy, they were very nervous and scared-as all families are at that point."

Mom Tatiana recalls that same fearful meeting, and what a relief she felt. "Dr. Stapleton took one look at Faith and she just took the initiative. She said, ‘We'll start her on chemo. We'll put the g-tube in and get some weight on her.' Right away, she had a plan. So I felt like she wanted to keep Faith as much as I did.

"I didn't even make it out of the building before I called everybody to say-we're going with All Children's!"

The nearly two years since then have been a ritual of Wednesday clinic visits to nearby All Children's Specialty Care of Tampa for Faith's chemotherapy. Dad Jamaal was in charge, but says it wasn't so easy at first overcoming Faith's fear of anything medical.

"It would be fine as long as she was in the stroller," he explains. "But the minute I took her out of that stroller, she'd look around and you could almost hear her thinking-‘Wait a minute, what are those white jackets? Is that a mask?' And then the screaming would start.

"Now, we pull up in parking lot smiling-‘Look! We're here!' She'll give everyone her little prima donna wave," he says with a chuckle.

"It's her routine," mom explains. "She knows she has to get her blood pressure, her temperature and her weight. She'll put her little finger out to get her poke (to draw blood for blood cell counts). And then it's off to the Infusion Room."

Sometimes, Faith needs more than chemo. Her tumor is monitored with regular MRI scans, which can also be done at All Children's Specialty Care of Tampa. Her hearing is also monitored because of the drug regimen's potential effects-and that testing can be done at the Tampa location. Another huge issue-getting Faith over her aversion to eating from the many months of associated vomiting-is dealt with through feeding therapy with speech-language pathologists at All Children's Specialty Care of Brandon.

But soon, Faith will be spending less time at the outpatient centers. Her chemotherapy regimen is now complete.

"She was very tough and was able to tolerate all the chemo that we gave her and did very well," remarks Dr. Stapleton. "The odds are in her favor. In most cases, we are able to cure the tumor without any further treatment after the chemotherapy protocol. So I'd expect her to do well."

"I'm going to miss it, to be honest," dad says, "because we have so much fun there. You get to know people. And once you get to know people it's kind of hard to take that away. I'm going to miss that, my daughter's going to miss that."

Watching a healthy-size three-year old Faith play with her brother Corey and sister Destiny makes up for it, though. "They remember Faith at 13 pounds and one year old," mom says, "and now they see her running around, walking, talking."

"I really didn't think that we would be here right now," she reflects with a guarded smile.



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