“You never really think you’re going to miss going to school, but…”
…but then your life turns upside down overnight and your perspective on everything changes. Isabella, or Bella as she prefers, knows this truth all too well for someone who only recently celebrated her 13th birthday.
To say things changed overnight is no hyperbole.
In a whirlwind 48 hours Bella and her family went from celebrating her sister Calista’s Sweet 16 to brain surgery at Johns Hopkins All Children’s Hospital. However, Bella’s story actually starts months before her surgery.
“About five or six months before this, she started randomly throwing up,” explains mom, Patti. “It would happen for no reason, and we couldn’t figure out why.”
For a tween girl who spent her Friday nights roller-skating with friends, to be sick so suddenly was very unusual. A plausible culprit at first was a stomach bug, but when the situation didn’t resolve on its own, it was time for more exploration. Bella’s pediatrician ordered blood work on several occasions and a stomach X-ray. Everything came back negative. The next step was an MRI.
The day after Bella’s scan her pediatrician called Patti into the office.
“I asked if I should bring Bella, and she said, ‘No, I need to speak to you by yourself,’ and my heart just sank,” recalls Patti, willing back tears. “I remember sitting at her desk and her telling me it was a brain tumor and that Dr. Tuite was waiting for us at Johns Hopkins All Children’s.”
The next morning Bella had her surgery.
Treating Bella requires careful coordination among teams across the Johns Hopkins All Children’s Institute for Brain Protection Sciences.
Neuroradiology. Neuropsychology. Neurosurgery. Neuro-oncology. The words alone are enough to make any parent’s head spin; however, for seasoned professionals, it’s all a well memorized, carefully choreographed dance.
Bella’s tumor was a medulloblastoma, the most common type of pediatric malignant brain tumor. Nation-wide there are anywhere from 4,000 to 5,000 new brain tumors in children a year and Johns Hopkins All Children’s physicians Stacie Stapleton, M.D., pediatric neuro-oncologist, and Gerald Tuite, M.D., pediatric neurosurgeon, see their fair share. After Tuite successfully removed the entirety of the tumor it was up to Stapleton to bring everything together.
The back part of the brain is an area associated with some aspects of learning, and it’s also where Bella’s tumor was located. Minimizing any further damage to that area was a top priority when considering her treatment options.
“Normally, for her tumor type, she would have surgery, then radiation to the brain and spine and then chemotherapy," Stapleton explains. "Bella is enrolled in a study that has allowed her to go from surgery directly to chemo. Right now, this is something that could never be done outside of a clinical trial.”
The trial, which runs through The Johns Hopkins Hospital in Baltimore, Maryland, requires the tumor to have a certain type of genetic mutation in order to be a candidate. Fortunately, Bella’s fit the bill. By foregoing the radiation, the hope is to limit any potential learning disability or other neuropsychological issue such as anxiety, depression or ADHD.
To check on this, a neuropsychologist is following her progress along the way. Before Bella had her surgery, a psychologist with special training worked with her to establish a baseline of her learning capabilities. Neuropsychology is different from general psychology as it doesn’t focus on counselling, but rather understanding the impact that treatment has on the brain. As Bella progresses through her treatment, she’ll have follow-ups to assess any impacts to how she learns, her ability to understand a variety of subject matters, and social skills.
The treatment lasts for 45 weeks, during which Bella will undergo nine cycles of chemotherapy. Some sessions are longer and require an overnight stay, others are a 10-minute outpatient visit. The chemo has zapped her taste buds, and she has dropped from 79 pounds to an even more petite 53. A discreet feeding tube hook-up helps make sure she gets enough nutrition–and, of course, her dad sneaking in Wendy’s fast food to her hospital room.
The Halfway Point
Aside from the knit cap on her head and the frequent chemotherapy visits, Bella is like any other newly minted teen: a little bit camera shy, but with expressive eyes that show a quick wit and fighting spirit.
She has good weeks and less than stellar weeks, as expected, but she doesn’t let that slow her down too much. Bella is counting down the days until her oldest sister, Kaylee, comes to visit, taking trips to the aquarium with her best friend and Calista and staying up to date with her favorite YouTube lifestyle vloggers–who attended her birthday party, by the way.
In between this busy social schedule, Bella still does her best to keep up on school work. Johns Hopkins All Children’s Patient Academics connected her with the Hospital Homebound program, which allows her to continue her studies online.
With the tumor gone, her MRI scans clear and chemo treatment halfway over, Bella will be back to Friday night skates with friends before she knows it.
Tumor Tissue with Purpose
Before surgery, Bella’s family made the decision to donate her tumor tissue to the Johns Hopkins All Children’s Institute for Brain Protection Sciences. It will be accessible to researchers seeking to better understand pediatric brain tumors.
There are around 100 different types of brain tumors. More samples means more thorough research will be possible.
Along with the opening of the Research and Education Building this fall, Ph.D. level researchers will be joining the Johns Hopkins All Children’s team – and Bella’s tumor type is already being requested.
Perhaps one day Bella can say she contributed to a more effective treatment – or even a cure – for pediatric malignant brain tumors.