Drew was the younger of the Nealleys’ two sons. Energetic and rambunctious, Drew was familiar with the bumps and bruises of childhood, but was otherwise healthy. So when the school nurse called telling his mother, Sarah, that her first-grader was nauseous and had a headache, she assumed it was the result of a schoolyard accident.
“He was funny and creative, loved to draw Star Wars posters and make superhero comics,” Sarah tells of Drew.
“My first thought was that he had been chasing his friends at recess, clocked himself on the playground equipment, and had a concussion,” Sarah recalls.
But the school relayed that no such accident had occurred.
At home, Drew’s headache grew worse… and worse… and worse. Sarah and her husband Eric took him to the local hospital for a CT scan.
“The look on the ER doc’s face when he asked us to come view the imaging told me that it would be life-altering,” says Sarah. “That was the moment I remember looking across at my husband and thinking our lives would never be the same.”
Just five days after first experiencing symptoms, Drew was scheduled to undergo neurosurgery at a nearby children’s hospital. His condition was dire.
“The night before his surgery, we had gone home to pack some clothes and eat a home-cooked meal when the phone rang and the doctor was asking for our consent to put Drew on a ventilator,” says Sarah. “They were able to take him off by the time we got back there, but we vowed to never both leave him after that.”
Surgery the next morning would confirm the worst: glioblastoma. The prognosis was not good.
The subsequent months were, unsurprisingly, stressful – especially given the Nealleys’ decision to stay by Drew’s side.
“I was frantically taking notes…and looking things up, trying to make some sense out of this unreal situation,” remembers Sarah. “We were at the hospital almost all the time, periodically showering in a small locker room and sleeping on ICU chairs, in waiting rooms, even the back of our Volvo station wagon in the parking garage (the only place you could stretch out).”
The Nealleys – with the help of family and friends – worked tirelessly to make life as normal as possible for Drew, while also doing everything they could for him medically and making sure their oldest son was loved and cared for, as well.
“I honestly don’t remember a lot about those early weeks when he was recovering from surgery in the ICU,” says Sarah. “ I do remember we celebrated his birthday in mid-January with some school friends’ parents at the hospital and that he was itching to get home by then.”
Once home, the Nealleys organized Drew’s medical and rehab appointments in a manner that would allow him to still attend school as much as possible. He loved school and his classmates.
For the remainder of that Spring, Drew stayed in relatively good health. He even racked up enough miles by June running around the schoolyard – despite the fact he was actively undergoing chemotherapy and radiation treatments – to win his school’s “Walker’s Program,” which allows students to walk laps and log their miles throughout the school year. He logged a whopping 89 miles!
“If willpower were a drug, he would have been instantly healed,” says Sarah.
Unfortunately, it wasn’t the case.
Following June, Drew’s condition began to quickly deteriorate. After having been well enough to take part in two family vacations in early Summer, Drew had grown significantly weaker by July. An MRI revealed that the tumor had begun progressing and spreading its tentacles. He was enrolled in a clinical trial for a new experimental treatment, but his worsening health forced him off the study. By mid-August, Drew was entering pediatric hospice care. On the last day of August 2006, Drew passed away. A mere eight months had elapsed between the first day that symptoms appeared and his death.
Sarah, the rest of his family, friends, and former classmates still remember him as “Super Drew.”
“I admit I am partial, but Drew was a pretty amazing kid to all who knew him and not one you could easily forget,” says Sarah. “He had a large presence for such a small person. On his first day of nursery school, he told the teacher his name was Super Drew and by the time I picked him up at noon, ALL of the teachers and administrators were calling him that.”
The Walker’s Program at Drew’s former grade school is now named after him and the Nealleys go back each spring to present the award.
After Drew passed, his family decided to honor his memory by creating The Drew Nealley Team for the Race for Hope DC. The team has been a staple at the event every year since, having raised more than $250,000 for the mission to conquer and cure brain tumors.
“We celebrate the lives of the many survivors who have joined our team over the years as well as remember those we have lost,” says Sarah. “It is never easy to get back out there every year, to hear the stories of other families and see the photos of those missing from their lives, but we feel we honor our little boy’s presence on this earth by reaching out and trying to help others facing a similar diagnosis. No one should have to endure the pain of losing a child if there is a way for science and policy to provide treatment and cure.”
Equally as impressive as the team’s fundraising prowess, is who makes up its roster. Drew’s grade school friends still participate every year, despite the fact that they are now all young adults. It’s a testament to his character and emblematic of his moniker.
While it’s sometimes difficult to go on, missing Drew’s larger-than-life persona, his family and friends cherish the memories they have of the young boy lost way too soon. They carry these memories forward and make sure the world remembers who he was and all he touched during his brief but impactful time on earth.
“He was funny and creative, loved to draw Star Wars posters and make superhero comics,” Sarah tells of Drew. “We even made him a Super Drew costume for Halloween when he was four…When our family got together for special dinners and we would all raise our glasses to say ‘cheers,’ Drew created his own special toast, as he raised his milk glass to clink with his grandad: ‘Rad Cheval!’ We never knew what it meant but we say it to this day.”
The Nealleys are creating change to give all families of pediatric brain tumor patients a lifetime’s worth of memories together.
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