Stronger Together
Hinsdale Family turns personal battle into a mission to raise awareness for pediatric cancer
September is Childhood Cancer Awareness Month. Childhood cancer is more prevalent than most realize. Hinsdale residents Matt and Christy Brown are the parents of 12-year-old Charlotte and 6-year-old Alexander. For the last two years, Alexander has been battling high-risk medulloblastoma, a malignant brain cancer that was located in his cerebellum – the area of the brain that controls balance and coordination.
“Hinsdale, unfortunately, is very familiar with pediatric cancer,” Matt relayed. He referred to Brooks Tonn, son of Robert and Nora Tonn, who passed away in 2017 from cancer. “In putting Alexander’s story out there, our hope is to raise awareness that people understand a childhood cancer diagnosis is not so rare. It’s not a one-off thing. Every day, 47 kids in this country are diagnosed with cancer.”
Alexander was diagnosed in early 2023 at the age of four. He had been waking up with headaches, but the Browns rationalized them as a childhood stage. Because Alexander seemed fine after waking up and starting his day, the family did not think they were a cause for major concern.
Memorial Day weekend that year was the beginning of a new reality. Alexander woke up vomiting on the holiday. He fell out of his stroller later that day and hit his head. Matt and Christy suspected a concussion. He showed no other signs of anything being wrong, however, so the family went ahead with the vacation they had scheduled.
“In the grand scheme of things, this was a relatively short period of time from when we sensed something wasn’t right and when he got diagnosed,” said Christy. “We know of other kids who exhibited similar symptoms, and while the child is being tested for food allergies, an aggressive cancer is rapidly spreading.”
On vacation, though, the vomiting episodes continued. The family visited an urgent care facility in Panama City, Florida. Alexander was initially diagnosed with strep throat, but when the vomiting continued, the Browns became worried. “We knew something wasn’t right, so we drove back to the ER and insisted on a CT scan and a full battery of neurological tests,” Christy recalled.
Christy and Matt Brown
“We want to be able to
help anyone we can.”
– Matt Brown
“Something we want to stress is that as parents, you know your own child best,” said Matt. The Browns hope to impart to others that while you must trust the experts, if something continues not to seem right or normal, it’s worth investigating. “You are always within your rights as a parent to ask questions or keep looking for better answers and treatments,” said Matt.
That day in the ER, the doctor looked at Alexander and said he didn’t see any need for the scan and tests based on his symptoms, but the Browns insisted.
That was 11 a.m. At noon, a doctor and nurse came into the room and told the couple that Alexander had a tumor about the size of a golf ball in his cerebellum, the back lower portion of the brain near the brain stem, regulating motor function.
From that moment on, the Browns have lived a nightmare no parents should ever have to live.
“It was a mad scramble from noon that day to get Alexander to a place he could be treated appropriately,” said Matt. Fortunately, Christy’s network of professional contacts at Medtronic, the medical device company where Christy works (and where Matt now works as well), was able to help fast-track Alexander to Children’s Hospital of Atlanta, where he received emergency brain surgery. Fortunately, all visible portions of the tumor were removed.
For the next ten days, the Browns struggled with the most difficult decisions imaginable. Due to Alexander’s young age, there were two schools of thought about how to proceed. One option was to administer radiation immediately. The other was to delay administering radiation while exhausting other treatment options, as radiation can have severe effects on such a young brain.
“What can happen to a young child’s brain when subjected to radiation is truly a parade of horribles,” said Matt. “Ultimately, we were connected with the global thought leader in medulloblastoma at St. Jude Children’s Research Hospital in Memphis. He invited us to St. Jude after he explained that Alexander’s particular subtype of medulloblastoma is very aggressive, and we needed to throw everything possible at it right away.”
The Browns went immediately to Memphis, where they stayed for the summer. Alexander began chemotherapy followed by radiation to his full brain and spine – a relatively new protocol that has been shown to be particularly effective on his type of medulloblastoma. But it wasn’t without its perils. Alexander’s hair fell out. He lost weight. His skin was tanned by the radiation. He had to be sedated every weekday for six weeks, a process that comes with its own risks.
“He went from being a really robust kid to one who looked like he was getting cancer treatments,” Matt recalled. “But his shining light never diminished. We were very worried he would lose his happy personality and loving nature, but it remains intact. And we’re so grateful.”
After completing his radiation treatment at St. Jude in August 2023, the Browns returned home to Hinsdale and continued Alexander’s treatment protocol with six rounds of intensive chemotherapy. They could have stayed at St. Jude, but it was crucial for Charlotte and Alexander to be at home for Charlotte’s fifth-grade year at The Lane School and to have the support of friends and neighbors in Hinsdale. The six-month chemotherapy protocol included many inpatient hospital stays, unplanned hospitalizations for otherwise minor fevers, and the constant struggle of balancing the need to keep Alexander happy and active with the side effects of chemo. But Alexander, with his big sister’s love and with the support of the family’s wonderful friends and neighbors, conquered chemo with his indomitable positivity.
After chemo was done, there were no more curative treatments left to do. Matt and Christy’s next struggle was finding a clinical trial for their son. Clinical trials are an important way to continue to move the ball forward on childhood cancer research, yet they’re not actively promoted by hospitals as next steps for families—families themselves have to seek them out. The Browns found a clinical trial for a drug that suppresses the recurrence of a cancer related to Alexander’s medulloblastoma, but time was of the essence, as strict protocols require patients to start within 30 days of the end of chemo. The Browns were fortunate to have been able to sift through descriptions of trials, reach out to the researchers in charge of an appropriate trial, and get Alexander enrolled in time. Not all families are able to do that. Once again, Christy’s network at Medtronic and from her health care management master’s program at Vanderbilt played a crucial role in ensuring that Alexander gets the best possible treatment.
The Browns want to stress their willingness to share what they have learned on this journey and offer their assistance to others who might one day find themselves in a similar situation. As Matt puts it, “when your child gets a cancer diagnosis, you immediately get membership into the best and worst family in the world. There’s something that links all families that go through cancer because you have to educate yourself quickly on some of the worst topics imaginable. Realizing you’re surrounded by people who can assist you is enormous.”
“We want to be able to help anyone we can,” said Matt.
Alexander with his older sister Charlotte
This March, the family went to Washington D.C. to speak to lawmakers about childhood cancer research funding – a cause about which they are very passionate. They also urged Congress to pass bills that help fund clinical trials for promising cancer drugs. In September, Alexander and Charlotte will “Climb the Hill” to advocate for childhood cancer research. They will have the opportunity to meet with Congressional offices to share their personal stories of how childhood cancer has affected them.
“Charlotte is fierce,” said Christy, referring to her role as an advocate for Alexander, as well as his big sister. Pediatric cancer truly affects the whole family. Since Alexander’s diagnosis, Charlotte’s childhood also changed shape. “We want both of our children to feel equally seen and heard,” said Matt. But that’s where it gets challenging. Under the circumstances, Alexander requires more of Matt and Christy’s focus at the moment. “We are learning to navigate those challenges,” he said.
Childhood cancer brings a lifetime of worry. There is the possibility of other cancers that could result from Alexander’s radiation treatments. Every three months, the Browns go back to St. Jude for an MRI scan to see whether the cancer has progressed. His scans have shown no progression of the disease thus far. But the Sword of Damocles hangs over the Brown family. Because all curative treatments have been exhausted, if the cancer progresses, there will be no curing it.
It’s hard to look forward to the future when you’re living your life in three-month increments until your child’s next scan with the highest possible stakes. “The level of stress we feel in the weeks approaching the scan is indescribable,” said Matt. “Scanxiety is a real thing, and it’s paralyzing.”
Still, the Browns feel gratitude knowing that if Alexander was ever going to be diagnosed, his chances of survival are much better today than they would have been even five years ago. “The more we can get our story out there, the more we can help people understand that while your child might be healthy today, you are not guaranteed the same tomorrow,” said Matt. “Because of research funding efforts, Alexander has a better chance. We all need to participate in these efforts. We want to help pay it forward so the child diagnosed tomorrow has even better chances.”
For more information, please visit Alexanderstrong.org.
