For most parents of two year olds, being overprotective goes with the territory. Little did Garrett and Shannon Phillips know that being too slow to stop their daughter Hannah from falling off a swing may have been the thing that saved her life.
When Hannah took a bad spill, landing on her back and head that Easter Sunday in 2011, her mother’s worst fear was that she might have a concussion. But a CT scan at a local hospital showed that the little girl had a lemon-sized tumor in her brain – and it occupied 20 percent of the space in her skull.
“We knew after sitting in the waiting room for such a long time that something wasn’t right,” says Shannon, who is a nurse. “Before the accident, she never had symptoms of anything and now they were telling us she had a mass in her brain. I was very freaked out.”
Hannah was transported by ambulance that very night from Wayne Memorial Hospital in Jesup, Georgia to Jacksonville for further evaluation by UF College of Medicine -- Jacksonville pediatric neurosurgeon Dr. Philipp Aldana, MD, chief of the Lucy Gooding Children’s Neurosurgery Center at Wolfson Children’s Hospital.
After five days in the hospital that included testing and a biopsy of the mass in her brain, Dr. Aldana and Hannah’s Nemours Children’s clinic hematologist/oncologist, Michael Joyce, MD, explained that she had a 6cm by 6cm, grade I pilocystic astrocytoma tumor nestled in her optic nerve, and that it was putting pressure on the nerve causing vision loss in her left eye.
“Astrocytoma comes from astrocyte cells, which are the most common cell type found in the brain, and these cells occur in the optic nerve where the tumor likely arose from,” explains Dr. Aldana. “Had we not found it when we did, Hannah probably would have had worsening headaches, vomiting, seizures and even could have gone into a comatose state. Eventually, it would have caught up with her.”
Because Hannah’s tumor was a grade I, which is the slowest growing tumor, Dr. Aldana said it was able to get so big yet still sneak up on them because of how slowly it developed, most likely beginning to form while she was still in the womb.
Hannah’s multidisciplinary team of specialists at Wolfson Children’s Hospital Neuroscience Institute worked together to tackle the problem. Since the tumor was so large, removing it at that time was not a safe option as it would have been a very extensive, complicated surgery. The plan became that they would shrink the tumor with chemotherapy until the size made surgical removal more manageable. So she was put on a regimen of dual chemotherapies, which involved weekly Friday trips to Jacksonville and later, additional chemotherapy that she could take every day for five days at home to complement the Friday infusions. This continued for more than two years until scans revealed that Hannah’s tumor was about half of its original size.
Even though the tumor was smaller and at a better size to attempt removal, Dr. Aldana knew that it still was going to be a challenge due to its location in the brain. The back of the tumor was sitting against the main arteries that supplied blood to Hannah’s brain, as well as the pituitary and hypothalamus glands and the optic nerve of her right, good eye. Because of its precarious position, Dr. Aldana knew going in that he would not be able to get the entire tumor out safely. So rather than risk being aggressive and damaging the important structures around the area, he stopped short at 80 percent retrieval.
“It resembled a hollowed out lemon, half still solid but the other half liquefied into a cyst-like state by the chemotherapy,” explained Dr. Aldana. “What was left behind was the tough, fibrous part of the tumor, and that made it quite difficult to get it out. We stopped when we knew we had gotten out as much as we could.”
Shannon recalls the surgery taking more than 15 hours from beginning to end. With the whole family in the waiting room at Wolfson Children’s Hospital that day in October 2013, they prayed that the Hannah they knew would be the same little girl waking up in recovery.
“We didn’t know what kind of damage might have been done by the surgery. When we went in the Pediatric Intensive Care Unit at Wolfson Children’s Hospital, we were surprised at how normal and peaceful she looked,” remembers Shannon. “When she woke up, she coughed and called for me, and she knew who we were, she could hear and talk. It was such a blessing.”
Hannah continued to improve in rehabilitation, healed up completely and has only a small scar under her hairline to show what she’s been though. Her only limitation is a permanent vision impairment in her left eye because the tumor arose from the optic nerve, damaging it beyond repair. She gets regular scans at Wolfson Children’s Hospital to monitor the tumor, but her doctors don’t think it’s likely that it will cause her any more problems. What once looked like a lemon on the CT scan, Shannon giggles, now looks more like a Frito corn chip.
Now at age 5, Hannah is a regular little girl enjoying being back at school. You might even see her on the playground swing, long curly hair flying in the breeze as she laughs and calls out to her friends. Had it not been for the fateful fall off a swing just like that one three years ago, Hannah may not have lived long enough to even see Kindergarten.
“These wonderful doctors and their team at Wolfson Children’s Hospital are next to none,” Shannon says. “Our experience with this group of people has impacted our lives immensely, not only because they saved our daughter, but because the compassion they showed us helped us believe that there was hope when we had none. We are blessed, and very thankful.”