For a week in 2018 almost 3-year-old Crosby Bowen seemed to have a stomach bug — he was fatigued and threw up a few times. He took a turn for the worse and suddenly died. The Bowen family later learned Crosby had a brain tumor. When their daughter Annabelle, now 2, was diagnosed with cancer in February 2021, 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,’” Nate Bowen, 41, Crosby and Annabelle’s dad, told TODAY. “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 had a rare genetic condition called Li-Fraumeni syndrome, a mutation in the TP53 gene — which normally prevents tumor growth — that increases a child or young adult’s likelihood of cancer. While this can occur spontaneously, it is often passed through families. Genetic tests revealed that Bowen also had it in July 2021 and doctors advised he undergo regular cancer screenings. Then doctors discovered that the dad had a brain tumor in September.
“I had no symptoms,” Bowen said. “They did a brain MRI and then they discovered I’ve got a large tumor in my brain.”
Yet while facing so many challenges, the family chooses optimism.
“My daughter getting cancer led to my genetic testing, which led to cancer screenings, and allowed us hopefully to catch it early enough,” he said. “It’s one of those bittersweet things where there’s bad that comes of it. But there’s a good part.”
Quick illness leads to tragic death
Crosby was full of life. He moved so quickly that many photos of him show a blur or just the side of his face.
“He was always going at 100 miles an hour,” Bowen said. “He was just a silly kid. He had some silly quirks about him and just a really good kid, who had a great laugh.”
He adored his siblings, an older brother, Dalton, now 8, and a younger sister, Tessa, now 4.
Crosby never slowed down until the week before he died. The family took him to the doctor, who first thought he had a virus. They took him home to keep him hydrated to recover, but he kept getting sicker.
“He just progressively got worse over that week, mentally and physically, but nothing that screamed brain tumor,” Bowen explained. “It was more like a physical exhaustion.”
On July 4, the family planned to take Crosby to an urgent care center, but Bowen took them straight 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,” he said. “But we could tell he’s really declining quickly.”
At the hospital doctors worked to resuscitate Crosby. After he stabilized, doctors discovered he no longer had any brain function. After moving him to Texas Children’s Hospital, the family learned that there wasn’t more treatment to help their son. After 24 hours, 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.”The doctors showed the family a CT scan that revealed Crosby had a large mass in his brain and they said he had a glioblastoma grade 4, “a very aggressive brain tumor.”
A new family member and unusual diagnosis
The family grieved. But they eventually wondered if more children were in their future.
“We decided to have another child,” he said. “We felt there was another person meant for our family. And so we had Annabelle and she’s been awesome and great.”
But at the end of 2020, they noticed Annabelle had a bump growing on her leg. They didn’t know what it was but returned to Texas Children’s Hospital.
Doctors said the mass looked vascular and conducted an MRI and diagnosed Annabelle with rhabdomyosarcoma, a soft tissue cancer of the muscles. In March 2021, doctors were able to remove her entire tumor before she started chemotherapy, which will end Jan. 24. Around that time doctors started genetic testing to understand why the Bowens had two children with cancer.The doctors suspected a rare condition called Li-Fraumeni syndrome. In the condition, a mutation in the TP53 gene makes broken p53 proteins, which cannot stop cancerous tumor development, according to the Li-Fraumeni Syndrome Association. Both Annabelle and Bowen have it and it’s likely Crosby did too, though they don’t know for sure.
“My parents tested negative on this mutation so I developed it on my own,” Bowen said.
His wife, Allison Bowen, Dalton and Tessa do not have it.
“A lot of times (a p53) mutation is associated with younger children getting cancer,” Bowen said.
But Bowen never had cancer as a child. Still, doctors started monitoring him with MRIs and other cancer screenings.
After being diagnosed with the brain tumor in September, he had most of it, a grade 2 astrocytoma, removed in October. He isn’t undergoing chemotherapy or radiation because it could increase his chances of developing a different type of cancer. Though depending on follow-up scans, his treatment course could change to include them.
“We’re trying to be very careful and only do that if they absolutely need to,” he said. “(Doctors) took 90% of it out so I’ve still got 10% left in there.”
Recovery for Bowen has been easier than he expected. But it’s tough having cancer while Annabelle also has cancer. Allison Bowen spends a lot of time in the hospital with Annabelle because if she gets a cold or a fever, she needs extra support. Despite the challenges, the family has learned a lot about one another.
“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 family knows that cancer will always be in their lives in some way whether it’s because of increased screenings, worry or another diagnosis. Annabelle is at a greater risk of developing certain cancers, including breast cancer, and Bowen could also develop another cancer.
“We’ve had to really narrow down our focus and be like, ‘OK I can get through today,’ or ‘I can get through this week,’” he said. “The uncertainty of not knowing is hard and also just the weight of feeling a loss.”
Having a strong faith in God and loads of support from their community, friends and family has helped. At times, it was hard to fathom such kindness and generosity.
“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.”