Pilocytic Astrocytoma: Gracie's Story
Little kids just don’t have neck pain.
That was the seemingly endless refrain Grace’s family heard over and over.
But Gracie did have neck pain.
As an active 4-year-old ready to start the soccer season, it was a strange situation.
The pain wasn’t constant, instead it came in brief spurts intense enough to wake her in the middle of the night. X-rays ordered by her pediatrician all came back normal. Changing her pillow, massages and a chiropractor couldn’t bring relief.
In search of an answer, Grace’s pediatrician referred her to specialist after specialist but many of the referrals were declined as she didn’t meet the criteria to be seen.
The fleeting nature of the pain in her neck made diagnosis difficult. With nothing clear on an X-ray and no symptoms during appointments, the cause of her intermittent pain episodes remained a mystery—all while steadily becoming more frequent and more intense, happening not only at night but also during the day.
“At night she would wake up screaming and crying from the pain and then fall back asleep like everything was fine once it passed,” explains mom, Allie. “I felt like something big was about to happen.”
Her motherly intuition told her she needed to keep pressing Grace’s pediatrician for more.
The night before this fateful trip to the pediatrician, the family was on its way to church when she had another pain episode. Grace insisted on going and Allie sat in the car consoling her until it passed.
“I prayed, ‘If she’s going to be OK, can we sing Amazing Grace?’” Allie adds.
The song that inspired Grace’s name was the very next song during the service. It could have been a sign of what was to come.
The next day Allie called Grace’s pediatrician to explain her frustrations and insist on blood work and a MRI. The orders for an MRI and bloodwork were sent to Johns Hopkins All Children’s Hospital. A scan was scheduled for five days later.
The head-and-neck scan unlocked the answer to Gracie’s problem.
“The physician assistant came out to talk to me and told me they had found a tumor and were taking the scans up to neurosurgery for further evaluation,” Allie adds. “It was a whirlwind to go from fighting for your kid to being terrified about what comes next.”
A tumor had grown to about the size of a lime and was pushing on Grace’s cerebellum, the lower part of the brain. She was admitted straight from radiology to the neurosurgery unit to await surgery the next day.
When the surgeons, led by George Jallo, M.D., met with the family, they brought reassurance that it was not a complicated surgery and confidence it would be a success. Known as pilocytic astrocytoma, Grace’s tumor was one of the most common types of benign brain tumor found in children.
“They were so sweet when they explained everything,” Allie recalls, a hint of amusement finding its way into her voice as she recounts a passing comment about the procedure being the most expensive haircut Grace will ever have.
No parent ever imagines her child’s first hair cut will be the result of brain surgery, but that was the new reality. When Allie mentioned that Grace’s Rapunzel-like hair had never been cut, she didn’t expect to be presented, post-surgery, a baggie containing a few wispy locks of hair salvaged from a seemingly impossibly tiny incision site. A memento of her first haircut.
The surgery went as expected and within a day Grace was well on her way to a full recovery. Her first order of business was painting a piggy bank provided by a Child Life specialist in rainbow colors. In just a few short days, she was moving around the unit, ready to go home. In fact, she had recovered so well that there was no need for physical therapy or occupational therapy.
Within weeks she was riding her bike and enjoying being a kid again. Grace did miss most of the soccer season but was still able to participate in the final game by kicking the ball in from the sideline.
Life a Year Later
A year after surgery Grace’s quarterly scans have shown that she is still tumor free. Though an essential part of ensuring she stays tumor-free, MRI days have been tough for Grace, often filled with many protests. As she approached her one-year scan, Allie made a bargain with her: a class party in exchange for her cooperation.
With her teacher on board with the idea, it was a deal no kindergartner could refuse. During the portion of the appointment where an IV was started, Grace flew through her appointment with little complaint, distracted by a favorite game on an iPad provided by Child Life. She didn’t even feel the IV.
The party planning could begin.
Like birthday parties are a celebration of life, Grace’s party was a different type of milestone celebration–life post-tumor.
Gathered together in the kindergarten classroom, Gracie’s classmates listened intently as Allie gave a presentation on Grace’s journey. Limes were passed around as a visual aid. There were party hats depicting areas of the brain and party games too, showing how the brain and the body work together. No celebration would be complete without a cookie cake, this one depicting a brain and proudly declaring “no brain tumor!” in multicolored frosting. The first of many more happy days to come.
“Looking back it is so crazy,” reminiscences Allie. “Gracie went from having a brain tumor to dancing around. She certainly has lived up to her name.”