At just two years old, Leon is the brightest light in his parents’ lives.
Gabrielle and David describe him as a boy who carries joy everywhere he goes.
He smiles easily, laughs often, and delights in the smallest of things.
It takes a lot to make him cry or feel upset, even though his life has been anything but easy.
Most of Leon’s days are not spent like those of other toddlers.
Instead of playgrounds and preschool, his world is filled with therapy sessions.
Physical therapy.
Occupational therapy.
Speech therapy.
Developmental therapy.
Each session is designed to give him strength, skills, and a chance at a fuller life.
And yet, when those sessions are over, the family holds on tightly to the simple joys.
A walk together as a family.
Moments spent with his cousins.
Watching Leon’s eyes light up when the family dog, Brisket, is nearby.
“Leon tries to be overly affectionate with her,” David laughs. “He just grabs at her, so she’s learning to keep her distance.”
These lighthearted moments are treasures, especially after everything Leon has endured.
The First Signs
Leon was just four months old when his parents noticed something unusual.
His head seemed to be growing faster than it should.
“At first, it caught us off guard,” David recalls. “We saw his head growing, but he seemed fine otherwise.”
The pediatrician didn’t waste time.
Imaging was ordered, and suddenly Gabrielle and David found themselves swept into a storm of medical urgency.
Tests on Tuesday.
Pre-op the very next day.Their baby needed brain surgery.
Gabrielle remembers staring at her son, his forehead enlarged in a way that made him look almost otherworldly.
“He looked like a little beluga whale,” she said softly.
Leon had already been born two months premature.
The family had only been home together for six weeks before they were thrust back into the hospital world.
There was no time to think.
Only time to act.
The Hospital Ordeal
From the moment they entered the hospital, everything moved in a blur.
Leon underwent a major surgery, followed by transfusions, swelling, and terrifying instability.
Two more surgeries were required for shunt placements.
Days blurred into nights.
“Even the nurses told us his case was one of the top three that traumatized them as a team,” Gabrielle recalls.
For nearly two weeks, Leon remained in intensive care, fighting for stability.
The trauma left scars, but so did the love.
Their neurosurgeon became more than a doctor — he became a source of hope.
“We say he was like our guardian angel,” Gabrielle says.
“He made us feel seen and cared for when everything else was chaos.”
A Changed Diagnosis
Initially, doctors thought Leon’s tumor was benign — possibly pleomorphic xanthoastrocytoma (PXA).
But his neurosurgeon insisted on biomarker testing to be certain.
He explained it with a metaphor: “It’s got a trunk. It’s got big ears. It lives in Africa. I think it’s an elephant, but we need testing to know for sure.”
Three weeks later, the truth arrived.
It wasn’t benign.
It was a high-grade astrocytoma, a much more aggressive tumor.
Gabrielle and David felt the floor drop beneath them.
The hope of “benign” was gone.
Now, their baby was facing brain cancer.
The Treatment Choice
Doctors offered three options: do nothing, start chemotherapy, or try a targeted therapy.
Exhausted and traumatized, Gabrielle and David struggled to imagine daily chemotherapy.
“The idea of going back to the hospital every day… it was too much,” David admits.
That’s when they learned about larotrectinib (Vitrakvi), a targeted therapy for tumors with an NTRK gene fusion.
Biomarker testing had revealed Leon’s tumor had this exact mutation.
The match felt like a miracle.
The very doctor who had worked on the original clinical trials was now at NYU, guiding Leon’s treatment.
“She told us, ‘I worked on the trials,’” Gabrielle recalls.
Her confidence gave them courage.
Now, instead of daily chemo, Leon takes liquid medication at home.
“Thank God for this drug,” David says. “It’s wild that it sits in our fridge next to the celery and sour cream.”
At first, they hoped Leon would only need the drug for two years.
New data suggests it may need to be lifelong.
But if it keeps him stable, they’ll accept it.
Life Today
Leon’s life is structured around appointments.
Mondays and Wednesdays: inpatient PT, OT, and speech.
Tuesdays and Thursdays: early intervention with multiple therapies.
Fridays: constraint therapy, where his strong hand is casted to strengthen his weaker side.
Between 10–15 sessions each week, Gabrielle drives him everywhere.
After losing her job the week of his diagnosis, she now sees it as a “blessing in disguise.”
David, a police officer, was able to take parental leave to help for six months.
Despite the grind, they find time for joy.
They hold space for being parents, not just caregivers.
They laugh together.
They breathe together.
They remind each other that Leon is not just a diagnosis — he is their little boy.
The Weight of Caregiving
The hardest part is the unknown.
“Will I ever play catch with him? What will he be like in five years?” David wonders aloud.
The future feels heavy, full of question marks.
For Gabrielle, the hardest part was learning to accept help.
At first, they wanted to do it alone.
Now, they understand that letting others in is essential.
Meals, babysitting, coffee dates — each one a lifeline.
They also leaned into therapy and self-care.
Gabrielle finds peace in yoga and reading.
David focuses on living one day at a time, refusing to be swallowed by “what ifs.”
Finding Community
Despite family support, the journey often feels isolating.
Friends sometimes clam up, unsure of what to say.
Others compare Leon’s journey to unrelated cancer stories, which only adds to the loneliness.
What Gabrielle and David want most is genuine concern.
A simple: “How are you doing?”
Through the National Brain Tumor Society, they found others who truly understand.
They joined the New Jersey Brain Tumor Walk, calling themselves “Leon’s Lions.”
Walking among others who share the same fears and hopes gave them strength.
Fundraising became a way to give back — to help other families have access to the kind of research and treatments that saved Leon’s life.
Looking Ahead
The future is still uncertain.
But Gabrielle and David are learning to live in the present.
They hold Leon close, celebrate small victories, and face each day with faith.
Leon’s story is more than a medical journey.
It is a story of resilience.
Of love that refuses to be broken.
Of parents who became warriors, and a little boy who shines brighter than the darkest diagnosis.
