BERLIN — After years of taking baby steps on the long road to recovery from an inoperable brain tumor, a local woman, called a “medical miracle” by her doctors, is getting ready to take on a big 3.1-mile walk in New York City to increase awareness and raise funds for the National Brain Tumor Society.
In 2006, Bishopville resident Robbie Whittington-Joyce, who was born and raised in the area and graduated from then-Worcester Country School, was diagnosed with a rare brain tumor called anaplastic astrocytoma after suffering a seizure while driving with her young daughter on Route 54 in Fenwick.
After seven years of surgeries, chemotherapy, radiation, steroid treatments and physical therapy, Whittington-Joyce has not fully recovered and likely won’t because her rare tumor is inoperable, but the tumor has not grown and the demon cells have not changed, giving her some semblance of normalcy and a spirit of hope as she continues to defy the odds.
“After the diagnosis, I was told there really wasn’t anything more to do,” she said this week. “The tumor is inoperable and there was no prognosis for me. I’m sure they didn’t think I’d still be here seven years later.”
Whittington-Joyce still gets an MRI twice a year and her tumor has at least stabilized, if not shrunk, and she continues to plod along in life as a wife and mother of two, which is a challenge for most even without an inoperable tumor in their head. She still walks with a cane and has a little drop-step condition, which she likens to a bad connection between a switch on the wall and an electric light at the other end of the circuit.
Despite her disability, she is now preparing to take on one of the biggest challenges of her post-diagnosis life. Whittington-Joyce is part of a team of individuals with the same rare brain tumor preparing for the New York Brain Tumor Walk on Governor’s Island on June 15. Through her connections and weekly conference calls with other victims of the same rare tumor, Whittington-Joyce is now part of a team formed by former New York Jets cheerleader Jaclyn Sabol, who is organizing the June 15 walk in New York. The walk’s main sponsor and beneficiary is the National Brain Tumor Society and the funds raised during the event will help increase awareness and support research.
Whittington-Joyce has been training every week on an anti-gravity treadmill at Atlantic Physical Therapy in preparation for the June 15 walk. Although the progress has often been slow and painstaking, she has no doubt she will be ready to tackle the 3.1-mile walk next month. This week, she completed half of a mile in 17 minutes on the treadmill and she continues to make strides, literally, to her goal.
“I still struggle every day, but I don’t have any choice,” she said. “I’m going to do the best I can and I’m confident I’ll make the 3.1 miles. There is no cure and it’s not going to go away, but I’m trying to help other people with the same thing. Frankly, I feel lucky I’m still here and I want to give back in some way to those who are going through the same thing.”
Whittington-Joyce has indeed been somewhat lucky through all of the seizures, car accidents and treatments, but more importantly, her perseverance and will to go on have driven her to the point where she’s ready to tackle the long walk in New York.
On Jan. 30, 2006, Whittington-Joyce was driving on Route 54 in Fenwick with her then-2-year-old daughter when she felt like her vehicle had been struck on the side by a large truck. She was temporarily blinded and could not hear, although she does remember hearing car horns blowing and people yelling as she continued on barely conscious for a couple hundred yards. Her vehicle ultimately jumped a curb and struck a palm tree stump before coming to rest.
Whittington-Joyce said she felt at the time like she had had a stroke. Paramedics arrived and asked her numerous questions to determine the extent of her stroke before taking her to the hospital. She was initially diagnosed as having had a focal motor seizure and she had a second seizure on a gurney in the hospital before undergoing testing. A CAT scan was performed after which the doctor delivered the life-changing news.
“The doctor came in and told me matter of factly that I had a brain tumor,” she said. “There was no candy-coating it and no leading up to it. It was the weirdest thing.”
Whittington was put on anti-seizure medication and saw a neurosurgeon in Salisbury who confirmed the initial diagnosis. She then sought a second opinion at Johns Hopkins in Baltimore and the news was no better. On Feb. 10, less than two weeks after the seizure on Route 54, she had a craniotomy. The surgery and the resulting pathology report confirmed Whittington-Joyce’s tumor was malignant and inoperable.
An oncologist decided the best course of action was chemotherapy and radiation to at least control the growth of the tumor. She also saw a neurologist because of the repeated seizures and was on several medications related to the seizures along with the chemo and radiation. She was also placed on a hard core steroid that affected her in many ways and recalled looking at the medication with trepidation.
“I knew they were poison, but I also knew I needed them to continue to live,” she said.
As if she hadn’t endured enough, in August 2009, Whittington-Joyce was driving on a rural road in Bishopville late at night when she suffered another seizure and rolled her Jeep before ending up suspended from her seatbelt upside down in a corn field. Hours passed before someone noticed the Jeep had left the roadway and entered the field.
“It was pouring down rain and I was hanging upside down by my seatbelt in a cornfield for three hours,” she said. “As a result, my whole right side was paralyzed, but at least I didn’t die. Through treatment, I started to get some of things on my right side back, but I was in a wheelchair and had to teach myself everything all over again, even the simplest things like how to eat. I used a walker for years and now I have progressed to using a cane.”
Seven years later, Whittington-Joyce has progressed from hospital bed to wheelchair to walker to cane and is now preparing for the latest challenge in a long series of challenges that would deflate a less willful and persistent individual with the 3.1 mile walk in New York in June. She is accepting donations and sponsorships in her name and on behalf of her team, the Jac Pac, for Jaclyn Sabol. Donation arrangements can be made at www.braintumorcommunity.org, or by emailing Robbie directly at email@example.com.