'My daughter getting cancer led to my genetic testing, which led to cancer screenings, and allowed us hopefully to catch it early enough.'
Crosby Bowen moved so quickly that it was pretty much impossible to get a clear photograph of the almost three-year-old. "He was always going at 100 miles an hour," the boy's father, Nate Bowen, told TODAY. "He was just a silly kid. He had some silly quirks about him and just a really good kid, who had a great laugh." The youngster adored his older brother, Dalton (now aged eight), and younger sister, Tessa (now aged four), and was full of life; until the week before his sudden death in 2018 that sent the Bowen family reeling. At first, doctors thought his symptoms—fatigue and vomiting—were caused by a virus and so, the family took him home to keep him hydrated to recover. However, Crosby's health kept deteriorating.
"He just progressively got worse over that week, mentally and physically, but nothing that screamed brain tumor," Nate Bowen explained. "It was more like a physical exhaustion." On July 4, Crosby was rushed back to the hospital. "On the way to the hospital is likely when he had a massive heart attack or stroke or something like that and stopped breathing. We didn't know," the boy's father shared. "But we could tell he's really declining quickly." Although doctors at the hospital managed to resuscitate Crosby, they soon discovered that he no longer had any brain function. Desperate, the family moved the boy to Texas Children's Hospital but were informed that there was no more treatment to help their son. Roughly 24 hours later, Crosby was taken off life support.
"It was just very traumatic because it was so sudden," Bowen said. "We got fantastic care and they brought in a child life specialist to help the kids say goodbye to him." It was later revealed that Crosby had a large mass in his brain and doctors informed the family that the boy had a glioblastoma grade 4, "a very aggressive brain tumor." The sudden loss of their beloved young boy left the family devasted. But they eventually began discussing if more children were in their future. "We decided to have another child," said Bowen. "We felt there was another person meant for our family. And so we had Annabelle and she's been awesome and great."
However, their joy was short-lived as at the end of 2020, they noticed Annabelle had a bump growing on her leg. Doctors at the Texas Children's Hospital conducted an MRI as the mass looked vascular and the two-year-old was diagnosed with rhabdomyosarcoma, a soft tissue cancer of the muscles. In March 2021, the toddler's tumor was completely removed and she started chemotherapy, which is set to end on January 24. Around the same time, doctors started searching for a reason why the Bowen children kept developing cancer. "The doctors said, 'OK, this is your second child to get cancer. Let's test your genetics and figure this out,'" said Bowen. "When you have multiple children that are young that have cancers, there's typically this genetic mutation often associated with it."
Tests uncovered that Annabelle and Bowen had a rare genetic condition called Li-Fraumeni syndrome, a mutation in the TP53 gene that makes broken p53 proteins, which cannot stop cancerous tumor development. Although they don't know for sure, it's likely Crosby had the same condition. Bowen's wife, Allison Bowen, and older children, Dalton and Tessa, do not have it. "My parents tested negative on this mutation so I developed it on my own," Bowen said. "A lot of times (a p53) mutation is associated with younger children getting cancer." Although Bowen never had cancer as a child, doctors started monitoring him with MRIs and other cancer screenings.
"I had no symptoms," Bowen said. "They did a brain MRI and then they discovered I've got a large tumor in my brain. My daughter getting cancer led to my genetic testing, which led to cancer screenings, and allowed us hopefully to catch it early enough. It's one of those bittersweet things where there's bad that comes of it. But there's a good part." Most of Bowen's tumor, a grade 2 astrocytoma, was removed in October. Although he isn't undergoing chemotherapy or radiation—as it could increase his chances of developing a different type of cancer—depending on follow-up scans, his treatment course could change to include them.
Meanwhile, the family's cancer journey has led to them learning a lot about each other. "I have really grown to see my wife in a different light and really respect the woman she is and how strong she is," Bowen said. "Our love for one another has grown through the trials and we're trying to be as positive as we can." The Bowen family credits their strong faith in God and support from their community, friends, and family for surviving these past few years. "There's been this outpouring of love that we hardly expected or anticipated and we feel so blessed by all the people that have either prayed for us or kept us in their thoughts or sent us a little money because we really are going to max out our health care costs," Bowen said. "We've been humbled and completely astounded."