Jordyn’s Story was originally published on The National Brain Tumor Society Website archived here.
Normally, the last thing anyone wants to find is that the family dog has chewed up a household item – especially a personal favorite. Kobe, usually, doesn’t chew on anything that isn’t meant for him, but, thankfully, he did chew on the youngest of the Smalls’ four children’s glasses one fateful day in May of 2017. Otherwise, it’s unclear when the tumor growing in Jordyn’s brain would have been found.
There were subtle signs that something might have been amiss, but sheer coincidence shielded Susan and Michael – Jordyn’s mom and dad – from any ability to sense something larger, more ominous was at play.
“Never in our wildest dreams did we think it would be a brain tumor,” Susan concedes
Jordyn, 13 at the time and an All-Star competitive cheerleader, began experiencing uncharacteristic difficulties during cheer practice and competitions. Emergency surgery to remove a swollen appendix, followed by a mononucleosis diagnosis shortly thereafter, seemed to offer plausible explanations for these challenges. Headaches and fatigue, however, continued to plague Jordyn as she began to compete again – likely just lingering side-effects from the prior illnesses, Susan and Michael had concluded.
It took Kobe’s munching of Jordyn’s glasses to set the course to discovering her ultimate diagnosis.
When the Smalls went to get Jordyn’s specs replaced, they learned she was overdue for a routine eye exam. During the appointment, the ophthalmologist found that Jordyn didn’t have peripheral vision in her left eye. A referral to a neuro-ophthalmologist didn’t immediately create any further significant concerns, but an MRI was ordered just to rule anything out.
Although Jordyn’s follow-up appointment was scheduled six weeks out, the very next morning after the MRI, the phone rang. It was the neuro-ophthalmologist, and he wanted to see the family, in person, immediately.
While Jordyn was taken for further testing, her aunt, grandmother, and Susan were ushered into the doctor’s office – with Michael, away on business, joining by phone. They were given the heartbreaking news, that their beautiful girl had a tumor seated deep within her fragile brain. Tears immediately began to flow.
“When [Jordyn] came back in the room, she saw us all crying and knew something was wrong,” Susan recalls. “The doctor explained what was found. We left shortly after in complete shock and denial. I’ll never forget the moment when Jordyn turned around to me and said, ‘Mommy, am I going to die?’ The rest of the drive home was long and quiet.”
News of the diagnosis hit Jordyn’s siblings equally as hard, particularly her older brother, Jared, with whom she shares a very special and unique bond. Jared, a recent high school graduate, was quiet for weeks.
“When I asked to talk to him, the only thing he would say was, ‘Is she going to die?’,” says Susan.
Unfortunately, the news did not get any better.
Experts at the Children’s Hospital of Philadelphia (CHOP) determined that the tumor was inoperable
Jordyn had to endure an arduous eight-hour neurosurgery just to get a diagnostic biopsy. And while the biopsy sample gave Jordyn’s doctors enough information to diagnose a diffuse astrocytoma, they were unable to collect enough tissue to perform the type of molecular testing that could help identify the specific mutations driving the tumor, hindering the ability to use precision or targeted therapies. As such, Jordyn and her family were left with options that consisted of systemic treatments like chemotherapy or radiation.
Following the recommendations from their team at CHOP, they chose the path of chemotherapy. But as it does for so many pediatric patients, the treatments wreaked havoc on Jordyn.
“Jordyn…was sick for at least six days every week after treatment, only to return [for another infusion] again on day seven,” says Susan. “She missed her entire eighth-grade year because she felt so sick all the time, which made it difficult for her socially and emotionally.”
Jordyn also had to step away from cheering, which was her world. She was heartbroken.
As Jordyn struggled to tolerate the effects of the chemotherapy, things also continued to take a toll on the family. Jared and the Smalls’ eldest daughter, Courtney, had both left for college and grappled with the guilt of being away from Jordyn while she was undergoing treatment.
Jordyn’s sister, Cassidy, was entering her junior year of high school, and while Susan and Michael spent every week at CHOP, she had to bear a larger load at home. Still, an A student, Cassidy missed school many times so she could go to treatments with Jordyn.
Susan and Michael carried a heavy burden as they both stretched themselves to be with Jordyn during treatment, serve as her at-home educators (with the help of her dedicated teachers), continue to work, and still maintain some normalcy for Cassidy while keeping Courtney and Jared feeling updated and included. The diagnosis was a strain on everyone and required a herculean effort by the entire family and their support system to be there for Jordyn.
After a year, however, the chemotherapy had failed to shrink Jordyn’s tumor. Given the quality of life considerations, her doctor decided to discontinue treatment. Fortunately, though, the tumor hasn’t grown.
It’s been nearly two years since Jordyn ended chemotherapy and her condition, thankfully, remains stable.
Like many pediatric brain tumor patients, Jordyn must deal with survivorship issues every single day. Jordyn has vision checks and MRIs every four months to monitor the tumor and check for possible regrowth. She still has no peripheral vision in her left eye and, not surprisingly, must manage anxiety and PTSD as a result of her diagnosis and treatment, which has plagued her recovery.
“It took her a long time to feel normal physically,” says Susan. “Her memories of treatment have made it difficult for her to heal mentally… She tries to be as normal as she can in between MRI’s but her anxiety and PTSD are high during scan time.”
Despite ongoing challenges, like short term memory and processing issues, Jordyn has returned to school and has excelled.
“She tries really hard in school because she feels like that is the only thing she can control,” says Susan. “She is active in many clubs and holds executive positions in a few of those clubs. She was recently selected as a member of the National Honor Society and is ranked high in her class academically.”
Jordyn made the thoughtful and selfless decision to begin trying to help other kids in similar situations
In addition to being selected to a state-level position for a service organization, Jordyn has started her own 501(c)(3) called Small Miracles. Last holiday season, Jordyn collected donations, and in a two week period, raised over $15,000 worth of gift cards and games. She created over 365 treatment bags that consisted of a $25 gift card, lip balm, fuzzy socks, a deck of cards and a HOPE rock, and delivered them to CHOP.
“While Jordyn went through treatment, she noticed that many teens were often overlooked at CHOP,” explains Susan.
“It wasn’t on purpose, but when people donate toys or games, it’s usually geared towards a younger child…
Jordyn was always very grateful for anything she received, but she wanted to make sure that everyone felt validated.”
The Smalls also began participating as a family in the Central New Jersey Brain Tumor Walk “in honor of Jordyn to raise awareness and funding for research,” something Susan says the family will continue to do “until there is a cure!”