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When 7-year-old Taylor Honea complained of pain in her leg and stomach, doctors initially passed it off as growing pains – not knowing a basketball-sized tumor was growing in her tiny body.
“She’s always been one of those kids that likes to come and creep into the bed around 2 A.M.,” Taylor’s dad, Brody Honea, told FoxNews.com. “When she would come to bed she would moan, groan and kick … It started off as a joke that she was putting bruises on our legs.”
But the jokes turned to fear when in December 2013, Taylor’s pain became unbearable.
“She started complaining about these pains in her shins and the top of her foot,” Brody said. “We started massaging it and giving her baths with Epsom salts and then right around Christmas we took her to the doctor. Within a week, it turned from mild discomfort to just crying all day long.”
Taylor’s parents took her to three different doctors near their hometown of Waco, Texas, before she was finally given a full-body MRI scan to see what was causing her pain.
“[The doctor] called me and his words were: ‘We found a very, very large tumor in her pelvic area,’” Brody said. “I think he may have suspected [her pain was caused by a tumor], but he said that these things usually turn out to be benign.”
Taylor’s family breathed a sigh of relief when a biopsy of the tumor initially came back negative, but they knew she would need surgery to relieve her pain.
During a 16-hour procedure at Texas Children’s Hospital, surgeons removed the 5-pound tumor that filled Taylor’s pelvis and caused her debilitating pain by pinching nerves and displacing vital organs in her abdominal cavity.
“I don’t think anyone here has seen that large of a tumor in the pelvis before, not our oncologist and I haven’t seen that before in my practice,” Dr. Andrew Jea, a pediatric neurosurgeon and director of the Neurosurgery Spine Program at Baylor College of Medicine who operated on Taylor, told FoxNews.com. “When she was on the operating table to begin with, it looked like this 7-year-old girl was pregnant. Because she was doubled over in pain all the time, no one could get a good look at her belly until she was under general anesthesia and lying there on the table.”
It wasn’t until after the mass was removed that further testing revealed Taylor’s tumor was, in fact, cancerous.
“The outer part of Taylor’s tumor was benign … a week after her tumor removal, an oncologist stopped by on a Friday night and he had to present the news to us that the biopsy of the tumor was malignant,” Brody said. “It was down and then way up and then just like down again … I don’t remember a lot about that evening, it’s so hard to describe.”
Taylor was diagnosed with a malignant peripheral nerve sheath tumor (MPNST), a rare form of cancer that affects the connective tissue surrounding the nerves, and does not respond to chemotherapy.
“It’s a tumor that grows off of a nerve,” Jea said. “There’s a benign variant and it’s very fast growing, causes a lot of pain [and] invades the nerve … The malignant kind actually falls under this broad category called sarcomas.”
Within 24 hours of her diagnosis, a team of specialists from five different departments – including surgery, oncology, urology, neurology and plastic surgery – came together for a marathon surgery to remove any cancerous cells left behind by the tumor while preserving as many nerve endings as possible.
“That area of the pelvis is kind of packed full of vital organs as well as blood vessels and nerves, so it’s very valuable real estate -- so any disruption, and you risk causing that patient a major complication, ” said Jea. “We wouldn’t embark on this aggressive surgery if there was another good option, and there wasn’t really another good option. When we discussed her case … it was either try this or she’s relegated to death.”
Over two days and nearly 40 hours of surgery, Taylor underwent a sacrectomy – a procedure to remove the right side of her sacrum, a triangular bone which connects the spine to the pelvis. Because of the severity of her cancer, Taylor’s sciatic nerve and tailbone were removed and replaced with screws and rods to reconnect her spine to her hip bones.
Jea warned Taylor’s parents about the risks involved with removing her tailbone – one of the most concerning being that she may never walk again. But it was a risk they knew they had to take to save their daughter’s life.
“He said ‘When I get in there, it could get very aggressive,’” Brody said. “He said ‘I think she’ll have some function, but just know that when I get in there, I’m going to keep digging until I find that negative margin, because if I do not find that negative margin, Taylor’s chances are very slim.”
Taylor’s prognosis got a little bit brighter when, one month after surgery, she took her first steps in her hospital room with the help of a walker.
Six months after surgery, Taylor remains cancer free. And while doctors can’t yet say she’s cured, Jea said she is improving each day.
“At six months without any signs of the tumor coming back, that’s a good sign,” he said. “The longer we go, the better the chance that Taylor’s probably going to be cured.”