A Turn for the Better
Checking in with Alexander Brown and family
Last September, we highlighted the family of Matt and Christy Brown, whose son Alexander, now seven years old, has been fighting childhood cancer for the past three years. A recent check-in found Alexander’s progress on the upswing. The Browns continue to make a difference through various avenues of advocacy.
“We’re just back from Alexander’s clinical trial in St Louis,” said Christy. The clinical trial he was involved in was to prevent relapses after he finished chemotherapy. Two years of treatment and 12,000 pills later, things are looking up. “So much of life was remembering to give our son his meds and having to lug them around wherever we went,” said Matt. “Then occasionally we would find a stray pill left behind that he somehow missed, so no more worrying about that!”
Since Alexander finished chemo, he has had to return quarterly to St Jude’s in Memphis for a CT scan to be sure no cancer cells have returned. The family lives under the worst stress imaginable – “scanxiety”- in the days leading up to these scans. Since the scans have been clear so far, Alexander’s doctors feel comfortable moving them to every six months from every three months.
“The curve is flattening,” said Matt. “Life just feels different. We know we can’t fully breathe easily, and we’ll never be stress-free about it, but having a six-month lease on life really allows you to look forward and worry less than we did at three-month intervals.”
But that’s not to say there aren’t struggles. Alexander’s hearing in his left ear has declined in certain frequencies, so new hearing aids are required. Under normal circumstances, his level of hearing loss could be aided by a cochlear implant. That’s a future possibility that must wait, however, as such a device could mask his brain scans.
Although it won’t be necessary, big sister Charlotte, 13, was the first to offer to learn Sign Language to communicate with her little brother. Since the beginning of his childhood cancer journey, she has been there for Alexander in any way possible. Twice last year, the family traveled to Washington D.C. to advocate for childhood cancer research.
One such event, Climb the Hill, found Charlotte and Alexander walking hand in hand up the steps of Capitol Hill and through the halls of Congress to knock on doors and speak personally to lawmakers. The goal is for kids to tell their stories from their own honest points of view without parents there to polish their narratives.
Results of events such as this are becoming apparent. The most recent Senate appropriations bill, passed in February, included the Give Kids a Chance Act as a rider. Give Kids a Chance aims to accelerate childhood cancer research by requiring drug companies to study combinations of cancer drugs in children. It’s a huge victory!
Christy continues to serve on the board of New Moms, an organization that provides housing, job training and family support to help young moms build confidence and break the poverty cycle. “I stay involved because I’ve seen how hard parenting can be, even in the best moments,” Christy said. “I can’t imagine being a mom in our program and facing something as terrifying as childhood cancer. That kind of strength is why New Moms matters.”
In late fall, the Browns – in collaboration with Wellness House – hosted Dr. Jim Olson, a pediatric oncologist from Seattle Children’s Hospital. Olson presented his team’s research toward advancing a potential breakthrough for some of the most aggressive and “untreatable” forms of cancer. Development of an “off-the shelf” therapeutic designed to bridge the gap between a patient’s own immune system and deadly tumor cells is underway.
The goal to launch clinical trials for this type of treatment is September 2027. Olson’s team is working double time to narrow the chasm between laboratory discovery and patient care. The timeline is ambitious and relies entirely on securing the necessary funding today.
Hope is on the table, and the Brown family is leading this charge. Their early and passionate support has truly catalyzed a movement that reminds us that while science happens in the laboratory, it’s the community that fuels the momentum. Their commitment has inspired families and donors across the country to join the mission.
“In the beginning, it seemed like nothing was going right,” said Matt. “We just couldn’t catch a break. That mindset can be tough to deal with, so for us to be here, thinking the odds might be shifting is a great feeling. But it’s sure strange.”
To join the Brown family in accelerating the breakthrough of cancer therapeutics, go to give.seattlechildrens.org.
Left: The Browns in Washington D.C., last year for childhood cancer advocacy. Right: Alexander Strong!
