Ask a Women’s Board volunteer “why” she gives her time and the answer will undoubtedly be that it’s for the children whom Wolfson Children’s Hospital serves. While the form of volunteerism may be unique to each individual, the motivation to devote hours to an event or program is constant. It’s a motivation fueled by stories of babies born at 26 weeks gestation who grow and thrive, it’s stories of children facing illnesses with courage and determination that many of us can’t begin to fathom, and it’s patient stories like Jaya’s that drive us to give of our time and talents.
Five year old Jaya was a happy, thriving child who enjoyed her new Kindergarten class and loved Minnie Mouse. Without warning, her mother awoke one evening to find her having a seizure and throwing up. By the time the family rushed her to a Georgia ER, Jaya was unresponsive.
“Our sweet little girl was perfectly normal one day and the next, she was in a hospital unresponsive in critical condition,” said Sue Jackson, Jaya’s grandmother “There had been absolutely no signs of trouble, no advance warning; just the seizure. It was mind-boggling.”
After transferring Jaya to another Georgia hospital, her team of physicians diagnosed her with grade II oligodendroglioma, a tumor that’s made up of “helper” cells to the neurons in the brain. Removing these cells is difficult because they blend in with brain tissue, making it hard for neurosurgeons to tell the difference between them and the healthy matter they’ve invaded. When these tumors are successfully removed, most children remain tumor-free within five years. If any residual tumor cells are left behind, however, re-growth of the tumor is likely.
Three months after her initial surgery, a follow-up MRI showed that Jaya’s tumor was growing back. Devastated and looking for answers, her family found their way to Wolfson Children’s Hospital Neuroscience Institute in Jacksonville, Florida, where they met with University of Florida College of Medicine – Jacksonville pediatric neurosurgeon Philipp Aldana, MD. Dr. Aldana explained to the family that another surgery (Jaya’s second brain surgery within that year) would yield the best results for Jaya.
“I told the family there’s no way to treat this type of tumor with chemotherapy or radiation alone, and that the main mode of treatment is surgery,” said Dr. Aldana, co-medical director of the Wolfson Children’s Hospital Neuroscience Institute and medical director of the Lucy Gooding Children’s Neurosurgery Center. “These low-grade tumors are slow-growing but are known to recur when not completely removed.”
He added, “We have the technology at Wolfson Children’s Hospital Neuroscience Institute that helps ensure that the tumor is removed completely. With our image-guided Brainlab neuro-navigation technology and intraoperative MRI (iMRI), we are able to navigate in the brain with the use of real-time, GPS-like imaging that not only spares healthy tissue, but allows us to see during the surgery if we have removed the entire tumor.”
At the mid-point of Jaya’s eight-hour surgery, the iMRI in the neurosurgical operating suite at Wolfson Children’s Hospital showed there was indeed a small bit of tumor left behind, and Dr. Aldana and his pediatric neurosurgery team continued to work until a second scan showed that the area was completely clear. As important as it was to remove the entire tumor, the technology also allowed them to do it as safely as possible.
“We just paced the floors during Jaya’s surgery. There’s so much that goes through your mind during a time like this. Would her speech be affected? Would her mobility? Would she still be the same happy child when she woke up?” said Jackson. “Not only was she fine, she got home in time to attend her Kindergarten graduation, and she got her little diploma.”
Chances are, Jaya won’t have a problem with another brain tumor. She will continue being monitored by her Wolfson Children’s Hospital team until the five-year post-surgery mark, but her treatment team has determined that the likelihood of her tumor coming back is very small.
Jaya’s story is just one example of the life-changing medical care that happens daily at Wolfson Children’s Hospital. Thank you for inspiring us as we volunteer, Jaya, and thank you for letting us be part of your journey now and into the future where we know many more diplomas and achievements await you.
For more information about The Women’s Board, our fundraising events, or Wolfson Children’s Hospital, please visit http://www.womensboardwch.com.
Annie Bryan lives in Jacksonville with her husband Josh. She is a member of the Art and Antiques Show Public Relations and Co-Chair of the Blog Committee. Annie works for the Arthur Vining Davis Foundation as the Special Projects Manager, and she serves as VP External Affairs and General Counsel at the start up company, HeroMe.